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June 3, 2021 - Text Transcript for Webinar, Bridging the Gap: Transition From Youth to Adult HIV Care

The ATN Youth Experts and Advocates for Health (ATN-YEAH), the Office of HIV/AIDS Network Coordination (HANC), and Community Partners produced a webinar, "Bridging the Gap: Transition from Youth to Adult HIV Care," as part of National Youth HIV/AIDS Awareness Day on April 9, 2021. The webinar was a moderated discussion on barriers and facilitators that can impact the transition from youth to adult HIV care. More details about the webinar can be found here. The full text transcript of the webinar is below. Some items in brackets were added to the transcript to define important concepts or terminologies.

Webinar Recording:

The recording can be viewed here.

Panelists:

Sandra Agola, JJ Jackson, Omar Nieto, members of the ATN Youth Experts and Advocates for Health (ATN-YEAH)

Moderators:

Russell Campbell and Brian Minalga, Office of HIV/AIDS Network Coordinator (HANC) and Community Partners

Start of Transcript:

[Russell Campbell]

Hello, and welcome everyone. My name is Russell Campbell. I am the Deputy Director at the Office of HIV/AIDS Network Coordination - HANC for short. And for those of you who don't know, HANC works with the HIV/AIDS clinical trials networks, which are funded by the Division of AIDS [DAIDS] of the US National Institutes of Health or NIH. And the focus of HANC is really creating a more integrated, collaborative, and flexible research structure. And for those who may not be familiar with the networks, the networks are an affiliated group of national and international medical research institutions and investigators that conduct clinical HIV/AIDS research to develop safe and effective drugs, prevention strategies, and HIV vaccines. So, we are delighted today to have some amazing folks who are from the ATN or the Adolescent Medicine Trials Network for HIV/AIDS Interventions' National Community Advisory Board, Youth Experts and Advocates for Health, or ATN-YEAH. So, in partnership with the ATN-YEAH, HANC and Community Partners - and Community Partners is a cross network body charged by the network leadership and DAIDS leadership with promoting effective representation of the many communities within the HIV/AIDS clinical trials network. And today members of the ATN-YEAH are going to participate in a moderated discussion to discuss barriers and facilitators at the individual clinical as well as structural levels that impact the transition from youth to adult care. And with us, so far we have Sandra and Omar, and I'll let you guys take over, introduce yourselves and we'll just jump on. Sandra would you like to start by introducing who you are?

[Sandra Agola]

Hi, hello, my name is Sandra Agola. I reside in Katy, so I represent the Houston aspect of the ATN. We've been part of the ATN since late [audio dropped]. I'm also part of the Youth Advisory Board here in Houston. I've been doing that since I was 16 years old. And also, I'm a childcare worker. I'm a full-time student and a YEAH member as well. So I'm pretty busy, loaded with the world of HIV and AIDS, and that's truly my passion. And my goal is to just be an advocate for Black women, like me, in the HIV community research facilities. And so my goal is to just bring cis women and cis men into the HIV research aspects.

[Russell Campbell]

Thank you Sandra. Omar?

[Omar Nieto]

Thank you, Sandra. Good morning everybody. My name is Omar Nieto, and I reside in Los Angeles, California. Like Sandra, I've also been part of the ATN-YEAH - so, the youth advisory board - since 2017 so, in addition to the work that we've done with the YEAH, because we've been able, we've had the pleasure of being able to meet in person several times over the years. And that's been great. Especially to get connected with a lot of the research projects that are happening through the YEAH. But in addition to that, I work as a project director for two different research studies that are run through the UCLA Department of Family Medicine, so one of them is looking to connect Black and Latina cisgender women, so really kind of in line with the - with the work that Sandra's talking about, right? So, like, bringing cis women into this work. So, I'm working to connect Black and Latina cis women to PrEP [pre-exposure prophylaxis] for prevention through use of a telemedicine service called PlushCare. And I'm also working on another social media, mobile technology project to help improve care for clients who are struggling with substance use disorders. So, a lot of social media, and a lot of prevention and treatment stuff, and I'm just happy to be here with you all today as part of this webinar.

[Russell Campbell]

Hey, thank you, Omar and Sandra. So I've had the pleasure of meeting Omar and Sandra as well as JJ in person at their 2019 face to face meeting, and it's taken us a while to make this happen, so we're just excited for the day. Feel free to ask any questions by using the chat or the Q&A, and we'll get to those, and I have some questions prepared for Sandra and Omar, and we're just going to jump right into it. So what are some of your thoughts and feelings around living with HIV in the context of care as youth moving into adulthood?

[Omar Nieto]

So, I guess I can start. Immediately the first thing that I thought about is well, one, who do we mean, when we're talking about youth, because I think often in these - conversation, specifically when we say youth living with HIV or when we say we're working on projects with young adults living with HIV, I often wonder what that actually means, right? So who are those who, is this like, amorphous group that we're talking about, because yeah, I mean, like that to me is such a broad - it's such a broad label to begin with, and I think Sandra already hit something very important, that, I think in most cases, when we, when we're trying to engage youth who are living with HIV, and we're trying to get them into care, and we're trying to get them virally suppressed or adherent, often I wonder if the focus is just on youth who identify as men who have sex with men [MSM], or youth who identify as trans women in particular. And so I'm always curious about, like, that, like, that nomenclature of, like, a young person living with HIV, because then I'll feel differently right? To some extent, I might feel a little bit more confident and comfortable in the care that youth who are MSM [men who have sex with men] and trans women experience, because I know that so much programming has already been directed with these two populations, right? And especially with trans women of color, MSM of color, I know there is so much support. But I don't know if there's the same amount of support for trans men or non-binary folk or non-binary youth who are living with HIV, and especially cis women, and in particular Black and Latina cis women who are living with HIV. So, I guess, yeah, while I definitely want to continue to get into this conversation, but I do just want to pause and just wonder, like yeah, so my feelings are going to - I feel differently depending on the group, because I feel like maybe some groups have received a lot more resources and attention than others, and so maybe some groups are more prepared to have this transition into adult care, but I don't know that that's the same for all young folks who are living with HIV in this country. So, I guess that's just - those are just some of my immediate thoughts, but I'd be interested to hear Sandra and JJ, what some of the thoughts that you have, and Russell, if you can, can you post this question in particular in the chat for us?

[Russell Campbell]

I certainly will, thank you.

[Omar Nieto]

Thank you.

[Russell Campbell]

And JJ welcome. And we did introductions a moment ago. Maybe if you want to just jump in and introduce yourself, and if you want to respond to that question before Sandra does, we can do that.

[JJ Jackson]

Yeah, sure, I'll go ahead and introduce myself. I wasn't sure which question we were on, so I'll hear first, and then I'll answer [audio dropped]. Hello everyone and again apologies for being tardy. My name is JJ, pronouns are he, him and his. I currently work, let's see, as a project officer in the HIV/AIDS bureau. We disseminate the Ryan White funding, and in particular I work with states and territories who receive that critical finding for people with HIV in various jurisdictions. On the weekends such as now, which is why I was late, sorry, I am a therapist on the weekends as well. So, I love the combination of mental health and sexual health for sexual minorities, so I'm super pumped to be here. And thank you for having me Russell, and all the Community Partners. So I'll turn to Sandra and then I'll jump in afterwards. Thank you.

[Russell Campbell]

Thank you JJ, welcome. Glad to have you.

[Sandra Agola]

Repeat that question, please?

[Russell Campbell]

Absolutely. What are some of your thoughts and feelings around living with HIV in the context of care as youth move into adulthood?

[Sandra Agola]

I think with HIV youth in general, I understand the preparation, I know, from Texas Children's, they started a youth gap program where they would start asking you questions every time you go to the doctor. They would ask you questions to inquire of, like, do you know your medication?  You know, simple things such as that, to prepare the youth to go into adult care. However, I think the spaces that they do are missing is - they forget HIV care is different from regular care. So you also have to include your dental care, your mental care in the process, not just HIV. I think that's the missed - the gap that's really missed. Like, for example, for youth, they don't know that I have to go to the dentist every six months. Once they transition, they don't have the help of their pediatricians and that community such as whenever you transfer to youth - I mean - to adult care, it's mainly you and finding your own community, which is hard.

[Omar Nieto]

Sandra, that's actually, a really good point, because I was thinking, especially the situation in LA County. So in Los Angeles County, that because, I mean, yeah, you're right like, when you're thinking of HIV care, it's not, it's not just HIV right? It's also dental - of care, or something, because, and now in LA County, there's only one facility that actually provides dental care to young folks and people living with HIV, and that's the Long Beach Care Center at St. Mary Medical Center, so I'm just - yeah I'm glad that you also brought that up.

[JJ Jackson]

Yeah, I'm not sure how much else I can add. I think Omar and Sandra really, really nailed it. It's not a singular thing, you know, although it is important. You know, what else is being impacted? What are the other syndemics? What are the other social determinants that are impacted by a person with HIV? And considering those things and bringing those things to the forefront, while we want their diagnosis to be managed. We also understand that if this person does not have a place to sleep once they leave their doctor, they'll be less likely to adhere or to be retained into care. So, what other systems are in place? Not only are in place, but are they outdated, are they antiquated, you know? Are they affirming? Are they prepared? Do they truly have the capacity, and are they effective in actually helping alleviate those other syndemics that are in place? So most times - I worked at a safe space back in Jacksonville, Florida, and so we only would provide case management to 'this age' and to 'this age.' And then, with the ones that were older you know, we kind of slide to, an immediate - not disconnect, but I was just like, well, we aren't sure what to do. Some came in, like, right as they were 'aging out,' as we would say. And so it's just like, well, what does the conversation begin to shift to? They're just immediately cast off. I was a proponent for considering what other things they have going on. They make the appointment, they can take their medication and be undetectable and be fine in that regard but again, they are homeless. They're not stably housed. Their mental health is deteriorating. How are we addressing those other things to ensure that there's a wrap-around sort of focus there that's in play?

[Russell Campbell]

See, you all moved us right into the next question. What are some of the gaps that exist related to transitioning into adult care, and what's needed to address these gaps? JJ you were talking about some, and earlier Omar you were talking about dental, so let's get into that.

[Sandra Agola]

I think one aspect that should be tackled is insurance. It's really hard to understand health insurance, and I feel like if you're transitioning from youth to adulthood, you're losing your child insurance - your parents', as you're depending, you're on your own now, now you have to figure out if I can continue on my parent's insurance; or I cannot anymore, because I've aged out, which means you have to find your own insurance. And a lot of times I think that not having insurance, or having to worry about insurance, you lose hope in trying even to find care, because you're like, all right I can't afford it. There's no way I can afford it. I might have just well, just figure it out in the process, and then they fall out of care, and then we're looking for those children, and we missed - it's like, it's always someone... They want to go into adulthood doing the best and then, they run into, you know life problems, and they don't know how to handle it, and they fall out of care. And I think I think the best thing to do is to think of health as in all like, mental, psychological, socially, mentally, all of those aspects before their send off. Like, give them the resources, the things that you think they would need, and if they don't ask, like, things that they're interested in, because a lot of times people don't speak up. Kids don't speak up. Their parents speak for them. So just pay attention to how things you know they're interested in. But like stuff like insurance and dental and if you're a woman, how many times do you need to go get a woman wellness check? When do you start breast mammograms? Things such as that. I think those are important in transitioning them into adult care, because that's also a form of preventative care.

[Russell Campbell]

Thanks Sandra. Omar, JJ, anything to add?

[JJ Jackson]

Yeah, sure I'll jump in. That was excellent, Sandra. I was taking notes myself. I think something that's - additionally, is also just the understanding that adulthood doesn't mean they have it all together, you know.  There's the assumption that you're an adult now, age-wise, so that means, you know, at least all your life domains are - should be - intact, and that you should completely understand what's going on. With someone, again, like I said, can be diagnosed right at the onset of where one would be aged out of transition to adulthood. But this is brand new, the system is brand new to them, and they may not have had the understanding of what it means to actually grapple with, you know, the demands of HIV care. And again, someone was alluding to another gap that I've noticed is just the advocacy of peer navigation - seeing other people who exist, and who are existing, or who are living, who are people with HIV who are working in different fields that are kind of guiding the process. It's so many opportunities to implement peer navigation, because that's so critical. And it's so important to see that representation beyond just surface level - someone shows up to a meeting, and just being identified as such, you know, seeing someone working or going through the system who has went through the various domains who can give some tips, who can give some advice who could give some, some guidance and some who can repurpose their new identity, and how to grapple with it, if they need to grapple with it. So, peer navigation, case management for sure. And again, not relying so much on those tried and tested sort of resources, you know. Can we think of, if, someone is homeless. We'll send them to [a homeless shelter], you know. There could be some not as affirming people. Like for cisgender males, they could probably have less of a, you know, less difficulty, sort of, merging with that than sending someone who is trans, feminine identified who was probably 6 foot tall or something, or pre-op, or a post-op, or just their gender expression may not be one that's been seen a lot, and how would they grapple with that? How would they address that? So, when we send them to these various places, or we send individuals like that to various resources: are those resources affirming? Are they understanding of what it means to be a person with HIV dealing with more and more systems? Is that pass off handled appropriately?

[Omar Nieto]

JJ, I think too, that's part of the reason why in the beginning I really asked - I wanted to pose the question of, like, who are we really talking about when we mean, like youth who were living with because if  - because if you put in names, or, like, if you put a specific group to that category, right? So, if you're thinking of, like of, like, trans women, trans men, non-binary folks who are navigating these complex systems, right? They are complex. And I think, Sandra also brought up, like, how complex insurance could be. And for some folks, I know a lot of my friends and peers who are living with HIV, it's a continual process where they have to reapply. And some people don't know that they have to reapply. And that, and then, because they missed their - because they missed the cut off date for applying for their insurance, that creates a gap in their care. And so, yeah, I'm always just curious, and I think both Sandra and JJ kind of hit on this as well, is that like, I think that when you are a young person, in particular young person living with HIV, perhaps you're more dependent on your guardians, right? Be they like grandparents or your, or your parents of birth to help to get you into care to motivate you. But I wonder, what happens when you begin this transition into adulthood? Are these young folks - do they have the education about these systems? Right? How to navigate these systems? Is that education there? Are they in a position to really advocate for themselves? Because, I mean, how many times do we run into this situation where we're talking with a young person living with HIV who feels completely disillusioned, and not just by the fact that they have to go to a doctor, take a medication every day, but just by the very fact that they're HIV positive, right? And having to grapple with what that means. And in some cases, what this transition to adulthood it looks like, is they're leaving home. They're leaving their, their safety net, right? And so I was thinking, like, Sandra mentioned that, again, if we're trying to approach young people living with HIV to reduce gaps in care, we have to look at folks holistically, and I think that JJ you brought up a good point about the need for peer management, but then I would also say that there is this gap in that like a lot of young folks living with HIV don't have social support. And so I think that there needs to be programs that connect young folks living with HIV with other people who look just like them, right? Who are experiencing the same thing, who understand what it means to be a young person with HIV who's trying to transition into adult care. And so that's why I feel like, in addition to peer navigation, there needs to be peer support, social support, embedded in so many of these programs. Right? We need to create opportunities where young people can connect with each other so they can strategize about, like, if someone says, I have never had to navigate this particular system, perhaps there is somebody else who already has gone through that. Right? And they're able to impart that wisdom and so, yeah. So I feel like there is a lot embedded in this conversation beyond just the typical 'make sure they go to their doctor appointments on time, make sure they take their meds every single day.' It's like, it's a larger more complex conversation, but, yeah, so that's kind of what I think about the second question that's posed.

[Russell Campbell]

So, there are some questions that are coming in through the chat and the Q&A. One is from Lionel, and I hope I capture this properly. "What are your thoughts on the youth input at the beginning stages, as opposed to being included?..." Give me a second. I'm sorry, I scrolled past it. I think, "into adulthood," so I guess from early on, as opposed to it being an afterthought. I hope I captured that correctly Lionel.

[Sandra Agola]

Are they asking as - so…

[Russell Campbell]

So, I'm sorry, so, as opposed to being included, once the direction is already decided.

[Sandra Agola]

Yes, I think having youth having their voice heard is important, especially in that particular community. Depending where they go get their HIV care. But I think it's important that they do have input, and such, that's going to be based on them, because that would be helpful to them, and they'll be more inclined to participate in research and such things, because they're also gaining access and knowledge to these, to these things. So I think it is important to have the youth first and then move forward.

[Russell Campbell]

Thank you. And then another question from Lionel, and this, you've touched on this in terms of talking about peer navigation case management, falling out of care, losing insurance. But Lionel's second question is, "what about the proper hand off to the adult agencies and follow up to make sure they are truly connected with their first visit?" Responses from the panelists?

[Sandra Agola]

I'm going, I'm going to speak from - there's a program at Texas Children's when I was in the process of transitioning to adult care. So what they did is, they had my case management, whoever was in charge of me, came with me to my first adult care hospital visit, and she was there to ensure that I was comfortable about asking any questions, and if there were any questions I didn't want to ask, she would ask them for me. So, somebody to advocate, someone I trusted to advocate for me if I couldn't advocate for myself. And also, now, now, as now, now they do a program where they have a youth to adult care person who helps them navigate everything, if they need insurance, if they need transportation, that they're there to help them navigate that and also there if they want, they can have him or them take them with them to their first visit and everything that they need, they're usually a text away and they respond. And so that's how they ensure that they can stay connected. So that's another idea as well.

[Russell Campbell]

Omar, JJ, anything to add? Okay. All right. This is a question that is from Mattie for the panelists. "What are your thoughts on the different types of stigma that youth living with HIV face as they move into adulthood?"

[Sandra Agola]

I can answer this one. I think in moving to adulthood you're thinking you're an adult, you want to date - there's dating stigma. So that's, that's the thing that a lot of people with HIV/AIDS, like young, don't do, or stay away from, or they just have sexual interests instead of like, a relationship with someone. Another stigma I would have to say, it's just, it's just every, like, I was just say stigma in how people react to such information, how people perceive it, how it's perceived on - in the news, on television and movies, it's always, men having sex with men, it's never just anyone, which is what HIV can - it can affect everyone. It's not just a gender-ized disease. I think they've, stigma all around, all around us, and it's hard to navigate that and still feel powerful and, you know, true to yourself. It's hard, because society says the opposite.

[Omar Nieto]

Right, and I think to Sandra's point, that's maybe part of the reason to why, you have so many cis women who are invisible in this conversation, is because there is persistent stigma from the eighties that HIV in particular is a gay man's disease more than anything. And I think despite all of the progress we've made, and all the work we've done in education, we've had to let us know that obviously HIV does not discriminate based off of gender identity, sexual orientation. Like we know these things, but this is a persistent stigma that still exists today, and it makes it really difficult for other folks who are living with HIV that don't identify as gay men to be able to advocate for themselves and to be able to feel like they are able to, that they can be included in care, right? That they could be included in this conversation. That they could have input about the way that other people talk to them, about the way that physicians talk to them, and the care they receive. And so I think that that is a stigma that continues to exist to this relationship with HIV and gayness that, I'm not exactly sure, and I think that part of the part of the way to debunk this stigma is, like, you need to continue to have exposure, right? So there needs to be many more trans folks and trans men, trans women, non-binary folks, there needs to be more cis women, there needs to be more heterosexual, there needs to be more cis gender folks, cis gender men who are heterosexual at the forefront, talking about their experience. So you're able to put a face to this experience so more folks are able to see that this isn't a disease that just impacts men who have sex with men. Like, we all are aware of the CDC [Centers for Disease Control and Prevention], we're aware of like, the prevalence of HIV and which communities are particularly targeted and while that's all good and well, that doesn't mean that there aren't other communities who are also impacted by the virus. So, I think that, and I think Sandra, to your point about, like, relationships, so often, I see that with, like, folks who are living with HIV there's this idea that they can only be with someone who is HIV positive because of this fear of, like, well, I don't want to get my other partner sick, or like - and I think we have progressed so far in science, just in terms of treatment as prevention [TasP] right, so the idea of undetectable equals untransmittable [U=U], and now we have other forms of prevention, right? So, we have pre-exposure prophylaxis [PrEP] in the form of Truvada for PrEP, of Descovy for PrEP, and even now injectable cabotegravir. So there are so many options out there. There's things that both partners who are in serodiscordant relationships where you have one partner, who is HIV positive, another one who's HIV negative. There's so much more possibility, but I just don't know that this information is out there. And I think that's part of the reason, perhaps why so many people are afraid to have these conversations or to even like, with another partner who's negative, or whatever. And I just feel like there, there definitely needs to be, because even, even thinking in my community is like, right so I identify as a Latino man. I'm Latino, I'm queer, in my community I spend so much time trying to advocate treatment as prevention, trying to advocate PrEP as an option for folks who are HIV negative, and yet so many people still don't know about these options despite all these commercials. And I don't know. Maybe that's just a product of a lot of this conversation, just being focused in queer communities and queer spaces, and not enough of it being in, like, more general public spaces. But, yeah, so I really do appreciate this question of stigma because, I don't know that we can have a conversation about HIV without talking about stigma, and the impact that's having on young people as they transition into adulthood.

[Russell Campbell]

Anything else to add?

[JJ Jackson]

Yeah, I, I really want to jump in there, but Omar had probably - definitely - nailed it. The only thing I can additively say is that we know HIV is criminalized, so that, what that brings about in a socio-political kind of stance, and from that perspective, does have implications of its own. And again, you know, they, they alluded to it perfectly. Omar essentially about the possible - and inadvertent - and unintentional - the erasure of other identities, they kind of, that could be impacted by HIV. It's not just a singular identity, that is, that we will get all the time. You know, they're other identities. And we've seen it. And there is always that element of surprise, like "oh, women can get HIV?" "Yeah, yeah." Anyone can get it. There are people get it from whoever, from birth, and if, and some people are really, really surprised and again, like Omar stated as well, is that while we both, we know this information, we would think this would be something that would be well understood. And I have loved that approach of moving it out of probably the concentration within queer communities into a more, just everyday health care service delivery system, and sort of repackaging that, because we have it situated in queer communities, which is great. But now, how well is it being understood in these queer communities? Not just that is, of a plethora of resources available, how well is that understood? Is it digestible? And we could transpose it to other communities as well.

[Russell Campbell]

Thank you. So, we're just halfway through this. This is wonderful. I'm just going to keep it moving. The next question that I put in the chat box for the panelists - "what is the role of researchers around helping address issues related to transitioning from youth to adult care?"

[Sandra Agola]

I think a good place - a good place - to start with the role of researchers - is helping - give me a second.

[Russell Campbell]

Take your time. Sandra, you're on mute. Still, you're still on mute - there you go.

[Sandra Agola]

I was reading it out loud to myself. The role of researchers around helping addressing the issues would just be I think to run - to see if they can do, like, those things - studies per clinic and see how that goes, and see what works, and what doesn't work. And if researchers can - are able to do that, I think they should disseminate that information to other sites as well to help them navigate their youth to adult care. I think it is - researchers play a big role, because they can reach more people after their research is done, because we don't - it's still a process of trying to figure out what works and what doesn't work. And that usually takes you know, time, because you're dealing with people. And so, I think just researchers disseminating their information to other sites could help those sites, and maybe they have information that they have that can help that site, and so on. So I feel like it has to be a community thing that everyone shares their information to better help everyone. So that's what my role of researchers would be.

[Omar Nieto]

Yeah, and I think some of this too, so, Alexis [P], she puts in the chat for one of the questions - "Do you see telehealth or telemedicine as a means of increasing accessibility to care by decreasing stigma and fear?" I think I can speak from the perspective of a project that I directed a year ago, or like almost two years ago. So there I was working on a HRSA-funded [Health Resources & Services Administration] Special Projects of National Significance [SPNS] initiative, and it was a social media initiative, so I worked with ten different sites across the country, and each of them developed their own social media or mobile technology intervention to engage youth along the HIV care continuum. [Learn more about the HIV care continuum.] And so, I guess, first to answer the question of "What is the role of researchers?" I think that researchers are in a unique position to strategize innovative ways to reach young people. And I'm thinking specifically of how COVID has drastically impacted our healthcare system, and so much has shifted to telemedicine or telehealth visits. And so, I think that there are opportunities for researchers to continue to investigate and evaluate the use of social media, mobile technology, telemedicine, and telehealth visits into care settings to see if this could be a successful way to help improve adherence retention in viral suppression. I'll say one of the pleasures of my - of that previous project was I was able to go around the country and interview young folks who are living with HIV who had a myriad of different backgrounds, and I was able to see the real life impact of these types of interventions because I think maybe sometimes when you're, we're engaging in research, we're not always as  - maybe the primary concern are outcomes, right? We all want to know outcomes. Is this effective? Is this increasing adherence? Is this increasing retention? Is this increasing viral suppression? Like, yes, these outcomes are very important, but I was pleased to see more of the personal impact it had on these young folks. Right? So, young folks who felt like they weren't able to advocate themselves finally being able to say oh, it's so easy for me. I can just call my doctor. I have all my labs and all my information there - it is readily available on my phone and so it's like they were able to find - they were able to have self-advocacy and the way that they are engaging with care, but also feeling like that they had a team of people there to support them, right? And they were able to connect virtually with other youth. That helped in many ways. At least the way they articulated it - the folks I was working with - or the young folks, a lot of them said, that they felt like being able to be in these interventions or these types of studies, where they could have not only direct, like a direct line of communication with their providers but also, with other youth engaged in these programs, a lot of them felt like, I feel less anxious, I feel less alone, I feel like, I'm not the only person that's struggling with HIV, and it's great to know that there is a community of young people out there. And so I think, yeah, I think in some ways, I'm trying to answer both questions, because I do think that telemedicine and telehealth programs are a really great way to improve, like HIV health outcomes and youth who are living with HIV but I would just urge, like, if this is the direction that we're taking, if COVID has taught us anything and if that means that we're going to continue to shift into this telemedicine virtual space, there's  - we still need - I would just urge researchers to find ways to build in social support and peer navigation so, yes, you're engaging them with care, but you're still connecting them with other resources, like housing resources, assistance in signing them up for insurance, right? If that's a necessary component, that's obviously a necessary component of care. So, I would just think, like, yes, telemedicine and telehealth is great, but I think that there are other ways to incorporate these other elements of people's care. And I think that the researchers, like I said, are in a unique position to be able to do that.

[Russell Campbell]

Thank you Omar.

[Sandra Agola]

I would like to make a comment regarding the telehealth question. I think that, yes, it can increase - no - it can decrease stigma. However, you have to also understand you - it's really the communities that we are - that you know, have HIV, who need HIV care, are usually in communities that are not able to access internet. So, internet access and accessibility might be an issue with telehealth. That's the only - that was the only issue - that I thought up when I saw that question. But I do think it is a great tool to help people in general to not feel stigmatized of - about HIV in general, however, I am - my concern with telehealth is the accessibility to people who don't have that resource.

[Russell Campbell]

Thank you. Okay, the next question in the chat box for you wonderful panelists - "Based on your experiences, what types of programs support remaining in care, continuing ART [antiretroviral therapy] and maintaining biologic suppression?"

[Sandra Agola]

Ok, so I would have to say, I - every year I volunteer at a camp called Camp Hope, which is - it's all HIV and AIDS, youth, children, up to the age of 16-year-olds, and I always have the pleasure with the 13-year-olds, and I've noticed what has truly helped them, and what has truly helped them through remaining in care and continue ART is usually they have a great relationship with their providers. They love their providers. They listen to their providers. Also they - they have knowledge, they know why they're taking these medications, they know why it's important. They know - they know that this is like a vitamin to them, so they know they need this in order to stay afloat. However, I think what mainly helps them is, is the knowledge of knowing why they're taking these medications, because then that helps them figure out like, okay, well, how can I be better at this? So, I think, them having the education about HIV and AIDS has truly helped them with thinking for themselves, is basically what has helped them, and also they also have a community so they, their community are their friends at camp every year so they can reach out to them throughout the year after camp and stuff like that. So that's their community. So, I think having a community in that, you know, youth in that area, and then also just educating them is important, because they want to know. They are very curious on, why am I doing this? Why am I taking this? So they want to know, and you letting them know will help them better take care of themselves.

[Russell Campbell]

Thanks Sandra. Omar, JJ, anything to add? Okay, all right. I have a question from Eddie. "How much does policy hamper or help transition to adult care?"

[Sandra Agola]

I don't think that policy technically would hamper transitioning to adult care, because like, as mentioned earlier, there were policies made that weren't particularly to that portion. There was no like, hampers, or confusion, because everyone had consent and was allowed to help the youth transition to care to another facility, and so, and so, and they usually will call the adult care to make sure they know that 'I'll be with so and so, so be expecting us together' and such. And also in adult care, they can't tell you who to bring to your doctor's appointment, so you have free will, because you're an adult now.

[JJ Jackson]

I was trying to think about how, in essence, the question, because you go so many different directions with it. Policy definitely is a help, to see things on a different scale and to help aid and then transition to adult care for, for folk with HIV, but just on the other side, is how much policy hampers, because sometimes there can be that disconnect between - is this really serving all of those communities that may be impacted by HIV? And so, are these policies understanding of just how variable - for, with HIV, you know, is it galvanizing language that meets people where they are? Or is this just overarching sort of blanket, sort of broad policy that doesn't really fit anyone? Would people just have to kind of make it - people have to try to just pick and, pick apart like the policy to see what fits them. And that should not be the methodology for policies. Of course, the idea is to be inclusive, but is it really capturing the nuances that may exist as far as transition to adult care on all those policies. Again, meeting those individuals where they are. So, and then when people think policy that becomes, it becomes like; it could be a barrier because, you know, we think 'policy,' and we think, 'oh, you know, that could never change,' but with enough advocacy and with enough support and again that bridging of researchers and the folk who are living, not only folk living with HIV, but stakeholders and general public, sort of, assessing those policies and saying, okay, 'how is this impacting my community? Is it serving my community? Is it inclusive? Does it bend enough to allow flexibility as far as those nuances that exist in transition to adult care? And how can it better serve the community as well?'

[Omar Nieto]

Yeah, JJ and then actually, I think just to this point of, like, is policy and practice, is that able to really - I mean, is it truly inclusive? And is it able to really meet these clients, I mean, these, these folks where they're at? Because, I guess the one place where I have the most discomfort with is just like general reporting requirements in terms of like, race, sex and gender identity, which I will always have a problem with. I think anytime I go into a facility or especially with the youth that I've worked with knowing that so many of them aren't able to articulate their transness, or they're not able to articulate their racial identity in the way that they want to articulate it, or their sexual identity, because the categories for identification are very limiting, and quite frankly, antiquated. And so I always think like, well, maybe part of the reason why so many of these young folks are some of these, like, these sub populations are invisible in this conversation is because there isn't, there isn't a comprehensive way for them to identify themselves that makes sense for their identity, right? I don't know, I mean, it's, it's something that I'm always thinking about. It's a frustration that I always have. But I know that in terms of, like, health reporting, like, they're at the behest of federal, and to some extent, like, state standards, in terms of, like the way that young people are able to identify themselves on these, like, in terms of documents. So, yeah, that's just another thing that I'm always thinking of. Are we truly meeting these young people where they're at? And part of that - and if we are, part of that means providing the space for them to identify in a way that makes sense for themselves. And I just don't always think that that's the case, especially when we're talking about trans or gender non variant identities. I see the question of, like, "what is your gender identity?" And it's like "male" or "female," and I'm like, those are biological sex. Those are, that's not - the biological sex and - Yeah. So, it's, it's a very messy thing, and I don't know that there's a simple answer to it, but that's definitely a concern that I always have about especially young queer folks, especially people who are living with HIV, like, are they able to articulate themselves in a way that makes sense?

[Russell Campbell]

Great. Thank you. I'm going to turn over the host role to my colleague Brian Minalga. I have a flight to catch. I'm gonna be on for a few more minutes, but in case this goes over, I just want to make sure that this continues, because this is a wonderful conversation. So, Brian, I don't know if you want to maybe take the next question that's in the Q and A?

[Omar Nieto]

Oh, right if I may - so I know that we are about 10 minutes - we're, we're almost up at the hour, because I'm just looking at the question that's on - can you pose the last question to us - that's in the - I think it's the one about the role about family partners and friends?

[Brian Minalga]

So, I think the questions might be in different order for different people. The last one I see is from Lionel here. So, if you see a question there, Omar, that you want to take, feel free to just to just go for it. I'm not sure where all the questions are located.

[Russell Campbell]

There was a question when we were prepping, and the question is, and I can put it in that chat. "What role does support from family, partners and our friends play in transitioning into adult care?" I'll see if I can post that one - is that what you're referring to Omar? [Omar gives a thumbs-up on camera.] Okay.

[JJ Jackson]

Okay, I guess I'll take that. So, the question is like, "what's the role of partners and others within that transition to adult care?" That was a question that was framed?

[Russell Campbell]

Yes, "what role does support from family, partners, or friends play in transitioning into adult care?"

[JJ Jackson]

Oh, yes, it's absolutely everything. You know, you really don't take stock of just the importance of the interpersonal things, that they really aid. And not just well, I won't get too out of line, but I think what's transition to adult care with people with HIV, I think support is so crucial and so critical, because I think that is the immediate piece that one immediately thinks about as for its impact upon learning upon an HIV diagnosis - how will my support system be impacted? Who will still stick around? And all of that is byproducts of stigma again. But again, that's the immediate question. How would my support system be changed? My significant others, my partners, my tribe, my communities who may have the capacity to handle, which may be in a moment is immediately heavy for me. And so to have a bolstering of social supports, and even peer navigation in your case managers, you know, that is so integral, because it makes the identity that less magnified, but not sure that's the right word but that less fearful, if there is fear. There are people who will definitely go into it without feeling either way. But for those for a larger sense - how do I find community? How do I bridge community? How do I galvanize community? And how would this be impacted by living with HIV? Just for instance, as a case manager in Florida, I would always encourage my clients and always be that role of support. And I didn't see myself as a supportive system, sort of, but just the - hearing years ago, like, years removed from my position, one of my clients just told me that they were so inspired by me being their case manager - something I fell into, by the way - that they have now got hired as a case manager in a community-based organization serving HIV/AIDS clients. They were super thrilled - sent me a long text that they got - they had the job, and they hope that they can do as good as a job as I did. So, just to hear those things, it's just like it's always rewarding, it is always very important to hear, but also reminding me, hey, it is through that support that they were able to not only take their identity, but also be in a role that would magnify their identity so that way they could be a support to other people. So, I think it's so critical to identify what support do they believe that they have, how can that be bolstered, what else could be brought to the table? Because it gives us - so very critical to have the interpersonal alignment there.

[Sandra Agola]

I would like to add to that. I think support is a personal thing, only because if you think like - HIV/AIDS a lot of time, it's very stigmatized, so a lot of people do not include their families in the process, I would say. So usually,  it's a very like lonesome journey, depending on how open you are to, you know, the people who are around you. So, I think with support, it depends on the person, but having, like, doctors - providers, and case management in the process is very helpful, because sometimes that's all they do have, is those people to help them through the HIV journey. So I think that as JJ said support is important, but I also think that that's on a personal - like, if you want support, if you don't want support, because it is a very sensitive subject to many people living with HIV.

[Omar Nieto]

Especially when you're thinking of like, the parents of young folks who are living with HIV, because I guess I know that this entire conversation was about this transition from youth care, the care that young people receive as youth, and then into adulthood. But I'm also thinking of, as a parent of a child who was either born with HIV, or who contracted be it through, like, injection drug use or through their partner, I wonder, like, because maybe to some extent young folks are so dependent on their parents for their care and, like, earlier on - is there the education, do the parents feel like, they have the skills necessary to go on this, to go along this road with their children? Right? Because I'm thinking of - there are a lot there are a lot of stories, I mean, even with the young folks I've interviewed, like, having a parent who didn't know that they had to take their meds all the time, or who didn't know which meds their kids had to take, or didn't really encourage their children to take their medications, so the children develop resistance to certain meds, which means that in their adult life it limits the type of antiretroviral therapy they're able to take. And in some cases, I know that for some folks, who are able to just take one pill a day, other folks have to take multiple, because they've developed a resistance at an earlier point in their life. So I'm just - I think that it's very instrumental if it makes sense, right, to include parents in the equation, but that's not going to be the case for everybody, because I think Sandra, I think you said it perfectly, that this is a very personal relationship, and I don't think that - not all parents are in a place to meet their children where they're at when it comes to their HIV healthcare needs there. And that's just the truth. I just don't think that parents are always there, which is why JJ to your point, that's why peer navigation is so important. That's why support from friends is so important or from chosen families is so important, because if you're not able to receive the support directly from your parents, even just beyond just you being HIV positive but also, potentially, because of your queer identities, or because of the sex, or because of the type of sex that you like to engage in, there still needs to be like a safety net for them. So if it's not going to be their parents that there, in some ways, we need to be able to prepare, like, other folks in their safety net to be able to help engage them in care. So, yes, I think that social support from some form is a very, very necessary component in this conversation from transitioning youth to, like, adult care.

[Brian Minalga]

Great, well, thanks everyone, we are closing out here - just a few more minutes left, and I see we have one comment and one question left. So, I'm just going to read the comment, because clearly the conversation has sparked a lot of thought - here, really thought-provoking conversation. Alexis, who's an adult provider, says "listening now, I realize we do not address the loss of community as young adults choose care at a multitude of adult providers in the community." So responding to a lot of the conversation that you've brought up already - the panelists. And then the question here, this will probably be our last question, and then we can make sure that everyone takes the survey at the end of the webinar, just to get your feedback. But this question is from Lionel and Lionel is asking - how much do you think youth understand the criminal component? Going back to what, I think, Omar was the first person to bring up about criminalization, or it was JJ actually. "How much do you think youth understand the criminal component once transitioned to adulthood, as opposed to being youth?"

[Sandra Agola]

Personally, for me, like I said, I used to, I also used to go to Camp Hope, so they would give us the laws surrounding HIV care, however, not many people who don't have that type of resource know that certain states do criminalize HIV. And I think that that is a very important aspect to know, because I didn't know. And let's say I did something reckless, and I didn't know, and I didn't know I had to disclose, and so and so, and something happened, they could charge me with a murder. So, I think it's a, I don't think many youth know, so, I think like, in the process of their transitioning aspect, they need to - that - learning about criminal laws about HIV would be helpful to the youth so they can also know what, how, you know, how to navigate outside pediatric care, cause it is important for them to know so they don't catch themself in a situation that they can't get out of, because no one told them, like, I didn't know. And that's usually how a lot of things happened is, I didn't know. No one told me. So I think it is something that should be included when youth are transitioning, because it is important for them to know, because it's not spoke about, like, all other criminal activities, but it is something that can criminalize you in many states.

[JJ Jackson]

One very great finalizing point to kind of back up what Sandra said. Also the other side is, how do we - I think there's been an issue and in spaces I've worked in was - How do you scale it down, and how soon do you tell the person? How soon do you inform him about that? So, as far as the approach, like, how do you communicate this? Because for some they are just the, the transition could be so immediate, it's a lot of work to do, as far as the information that they have to learn about it. So I've grappled with how soon as far as like the timeliness of it, when, how do you approach clients about it, and approaching it, and being careful - not careful, we're being mindful - to scale it in a way to where it's very intentional that they are aware, and they know. And I also think that timeliness is also important factor as well. I think, as one reaches adulthood, there could be a more transparent conversation, but if younger, it may do some harm, if not translated appropriately, or in a very harm-reductive manner. I just wanted to put that out there as well.

[Brian Minalga]

Wonderful. And it's also a great option for getting people involved in the advocacy to help decriminalize HIV, because HIV should not be criminalized, and youth can play a role in that type of advocacy as well, if we help improve the information about HIV criminalization. So, great points from everyone. We also had an invitation from one of our - one of our attendees who'd like to invite everyone to another webinar on a related topic. So we're going to - I've included an email address where they can send that flyer, and we'll make sure that folks get that. So thank you for sharing that. And we are a little bit over time now, so I just wanted to, at this point, open up for our panelists to share any closing thoughts as we go into tomorrow, which is the actual day: National Youth HIV Awareness Day. So any closing thoughts from our three panelists?

[JJ Jackson]

I just wanted to thank everyone for the opportunity. It's been a stellar opportunity to present with Omar and Sandra. The caliber is super, duper high, so I'm very excited to be presenting with them. Yeah, thank you to everyone who's doing work on the ground - stakeholders, those people who live within HIV communities impacted by HIV, and everybody who has an affinity for this community. Thank you all for your tireless work and dedication and oversight. It's been incredible being here. Thank you.

[Omar Nieto]

And I think to JJ's point as well. I appreciate the offer to continue to engage us in these types of conversations. And so I would love to - I would love, because I love the idea of, like, especially I think, I don't know if Lionel asked a question in the beginning about like, what do you think about the difference of, like, including youth, either before, versus after once, like, all these decisions have been made? I think it's very important to continue to get youth voices and youth perspectives, particularly the voices of youth who are living with HIV, in these conversations. So, I do appreciate that offer, and I look forward to continuing to work with you all to whatever capacity that that makes sense.

[Sandra Agola]

I would just like to say, thank you for this. A great conversation that we've had today. Closing thought would just be - just always think of HIV youth as any - like, your child. Like, what would you want your child to know if they were transitioning into adult - adulthood? What are those great key factors that they need to be successful in their adult - that's the same. That's the same aspect that we should tackle bridging adulthood and the youth. I think that's one way to look at it. And thank you.

[Brian Minalga]

Wonderful well, thank you all so much to our panelists, especially for an inspiring conversation moving ahead and to tomorrow, National Youth HIV Awareness Day. Thank you to our attendees for your amazing questions and participation today, and please do stay in touch. We look forward to more of these conversations. Have a wonderful day everyone.

End of Transcript

Webinar Recording

The recording can be viewed here.