Transcript for Linkage and Engagement Module
Steven: [00:00:30] I just got to say it out loud. I'm HIV positive. [00:01:00] HIV positive, me. I can't tell mom and dad, it'll kill them, either that or finding out that their perfect son is a faggot. I might as well dig two six foot holes and just throw them in now. Camilla will help, as long as she doesn't make me tell them. [00:01:30] What am I going to do? I've got school, work, track. I can't sleep, I can't eat. I can't even focus. I guess I just ... I got to stay on my grind, it's all I can do. The test guy kept saying that it would be a lot to take in. Well, yeah. [00:02:00] I can barely remember anything he said. I got to see a doctor. I guess I'll call tomorrow. I'm a hot mess.
David: Yeah, hearing that story kind of breaks my heart. Seeing a kid like this go through what he's going through and what he's describing. Do you see guys like this a lot in your practice?
Lisa: Yeah, I mean Steven is not unlike [00:02:30] many of the young men that I see who are newly diagnosed. You know, for me, any reaction that someone has to their diagnosis is a normal reaction because there is no normal reaction.
David: Right.
Lisa: And you know, Steven is so like so many of the youth where HIV is a huge deal. It's not diabetes, it's not high blood pressure, it's HIV, as he said. It's a big deal, but they also have so much other stuff [00:03:00] going on; they have school, they have relationships, they have issues with their sexuality, and all of these things really make the HIV even more of a big deal, and really impact how they approach whether or not they get into care.
David: Yeah. One of the things that struck me is kind of how he said he didn't hear anything after the HIV diagnosis. I think as providers, we miss that point a lot, is that sometimes when people come in and we may give an HIV diagnosis [00:03:30] sometimes, and for us it's not our first time at the rodeo, like telling somebody and breaking that news to them, but you have to remember that that's that person's very first time hearing that. After he hears those words, "You're HIV positive," he may not hear any of the things that you say after that.
Lisa: Right, nothing else, nothing else.
David: The goal of His Health Today in this module is to increase the capacity, quality, and effectiveness of healthcare providers to screen, diagnose, link, and retain black MSM in HIV clinical care. Now, tell us a little bit about this module and what we're going [00:04:00] to talk about today.
Lisa: Great. Our goals really are to talk about HIV in youth. We'll talk a little bit about why youth are important. What is the epidemiology or the epidemic in youth? What does it mean to be linked and retained in care as it pertains specifically to youth? Then I think the main part of this module, and the really critical part, is to help providers take better care of youth in their clinics, particularly young men who have sex with men [00:04:30] of color. So hopefully by the end, there's certain objectives that we'll get through, and what I really hope is that at the end of this module that providers have expanded their cultural competencies in a lot of areas, not simply how to take care of young MSM, but really how to take care of young MSM with HIV in a way that makes the engaged in care, makes them want to stay in care.
In addition, it's not just about [00:05:00] the youth, and it's not just about the provider. So what are the other systems of care that impact whether or not this young person will stay in care? And how can we address them in what we do? Then again, I think as providers we want some takeaways. We want to have some actual things, steps that we can do to improve our practice. So hopefully by the end of this, that is what you'll take away; some real concrete steps to improve your practice [00:05:30] to engage young MSM in care.
David: I think, before we get started with the module, there are a lot of terms and some people say, "Why is there a focus on youth? Why do we have to focus on youth?" And some of these terms that we throw around, like linkage to care, retention in care, what do these terms mean? How would you unpack that for the providers watching?
Lisa: Yeah. I mean, I think youth is relative. There's youthful states of mind and then-
David: I'm young.
Lisa: You're very young, but when we talk about youth, particularly when we're sort of focused [00:06:00] on statistics and how we look at youth in terms of the HIV epidemic; age 13 to 24 is really kind of that range. It is important, and we'll discuss it later on, because the youth brain is different than an adult brain. We use the term MSM quite a bit, it's sometimes an unsatisfying term, I think, because it doesn't capture a lot of the importance of identity and behavior and attraction, but it's a [00:06:30] term that simply put means men who have sex with men. We use it to categorize the sexual behavior and not necessarily the identity and the attraction. Black is again defined as sort of people of African descent, whether African American or bi-racial, really sort of capture that experience and identity.
Then we get into sort of the care terms: linkage to care, retention in care, engagement in care. We describe [00:07:00] it as a continuum, but really linkage to care is sort of making the connection between testing and meeting with a provider. Retention is something we measure over time; how often does someone come back to their clinic appointments? How often do they get their labs checked? Engagement, to me, is that spectrum. To be engaged in something is to be invested and part of it, and have a role and a stake in it. So to be engaged [00:07:30] in your own care means that you're going to take ownership of it, and because of that, you're more likely to come to the clinic, more likely to take your medicines, more likely to achieve healthy outcomes.
David: Yeah, I think when we look at a question like that, there's a bunch of different factors that play a role, and I think one of the messages we want to give the audience here, and for providers who are watching, is that this is a shared responsibility. [00:08:00] So it's not just on the patient's shoulders to kind of bear all the burden of HIV, and a lot of times some patients are coming into our offices and looking for that kind of validation, looking for the affirmation. For lack of a better word, looking for love from the physicians to kind of say ... And the nurse practitioners, the PAs, to kind of say, "Hey, it's okay. We're going to take good care of you," because an HIV diagnosis is not the same as hypertension or diabetes, it's a very scary thing, particularly for youth.
When we talk about youth, we [00:08:30] separate them out from people who are a little bit older, generation X, baby boomers. So when we unpack this a little bit, why are youth so important? Why do we talk about youth and have a specific focus on them?
Lisa: Right. Well, in the context of HIV, which is what we're talking about, we focus on youth for a variety of reasons. As you saw in some of the earlier slides, youth are impacted heavily by the epidemic in terms of newer cases. Then when we look at a slide like this, the HIV care continuum, this slide gives us sort [00:09:00] of a snapshot of how well we're doing really, and it's really sort of from the point of being diagnosed, engaged in care, and getting to the endpoint of viral suppression, right? The endgame. That's what we want. We want everyone with HIV to be diagnosed and suppressed. When that happens, it not only impacts their own health, but it prevents transmission, so it's really the key public health strategy to end the epidemic.
When we look at how we're doing with all people living [00:09:30] with HIV, again, these continuum diagrams vary by geographic location, but if you look at the study that we have here, about a third are virally suppressed, so a lot of room to improve. When you focus specifically on youth, and we actually don't have great data for the very young who you would anticipate would actually not do as well, but if you even look at just the group who's 18 to 24, viral suppression rates are even lower than in the adult population. [00:10:00] So again, a lot of room to improve at all stages of the continuum in terms of diagnosing youth, engaging them, getting them on therapy, and then getting them to take their therapy consistently.
Unfortunately, what we see with HIV is a startling disparity. It isn't an equal opportunity virus in some ways, in who's being impacted. Unfortunately what we see is that black, particularly young black men who have [00:10:30] sex with men, or MSM, are startlingly disproportionately impacted by HIV. Again, if you just look at the red line on this graph, the cases of HIV in this population are shoulders and above those of other MSM. Again, if you look at healthcare access, this gets into why we see the epidemic and why we continue to see cases, but about 60% of HIV positive black MSM don't know their status. At every stage of the continuum, [00:11:00] HIV positive black MSM have less likely to access care, less likely to be adherent to their antiretrovirals, and less likely to be on antiretrovirals to start with. Again, these are things that don't have to be a disparity. We can address this. These aren't insurmountable things, but they exist. So we must recognize them and then hopefully address them.
David: Right.
Lisa: This is another study. This is a meta analysis. This study looked at a [00:11:30] lot of different things that impact HIV, and impact individual health of those with Hiv infection. For all of these things, black MSM were less likely to have high CD4 counts, less likely to have healthy immune systems, less likely to use antiretrovirals, less likely to be adherent. All of the really critical things to keep them healthy as well as to prevent onward transmission.
David: Right.
Lisa: So again, it just reinforces the point that [00:12:00] the research is backing up what we're seeing in clinic. We know who's coming in our doors. We know the patients, we know what's happening, but this is research that backs up what we're seeing in our practice.
David: And if you look at these statistics, what are your thoughts about looking at these? They're pretty shocking, pretty devastating when you look at these numbers. Break down these numbers for us.
Lisa: Statistics are ... You know, they impact you by putting numbers to, again, what we're seeing. [00:12:30] I think if you really think about that one in four black MSM is going to be infected with HIV by 2025, those are shockingly high and disturbing statistics. By the age of 40, again, 60% might be infected. However, I don't like to get distracted by statistics, right? Because I think statistics without solutions are useless and actually can be harmful to the population we're trying to work with and to serve. [00:13:00] So I take these statistics as a reason to make changes in my practice and to try and impact them without letting it completely color how I think about HIV and the epidemic.
David: Yeah, and I think another thing about the statistics, and to keep in mind for providers who are watching that may not be as familiar with some of the statistics, is that some of these statistics actually look at HIV prevalence from a sample of people [00:13:30] in the community at a certain particular point in time. So they could say in certain studies we've seen with black MSM, one out of every two, or 46%, there was a study several years ago that said that, but then when you see some of these more recent studies where they say 60% infected with HIV by age 40, or one out of every two black MSM that you see at the recent CROI conference that was said, it's important to remember that these are estimates as well. It's kind of based on a number of assumptions; if this practice still happens, if this rate of infection keeps going, if prep doesn't work, [00:14:00] if these other things that we're going to talk about in this module don't get done, if people don't get linked to care, then this can happen, but it's important to kind of ... These are great splash statistics to put in the New York Times or USA Today, but it has to be taken in context.
Lisa: Right, and it can be something that feels like it's an insurmountable thing. Why should I even care if I'm going to get infected? But I think you characterized it beautifully. If we don't make changes in the way we're approaching this epidemic [00:14:30] for black MSM, that these are the statistics that we'll continue to see, but we can make a difference, and here are some of the ways, hopefully, in this module that we can address it from the care perspective to make a real difference.
David: Absolutely. When we talk about this, a lot of times in public health, what's popular is to blame the victim, right? Focus on the individual. So when we talk about black MSM, we'll say stuff like, "Well, they don't access care. They don't take their medications. They, they, they," and we don't tend to focus on larger issues or kind of the multi-level things that are happening. [00:15:00] What are your thoughts in your research, your practice, and what you've seen as far as, how do these different levels kind of interact so we're not just saying, "It's all on the individual level," which we know doesn't explain the disparity. Why are black MSM more likely to get HIV or more impacted by HIV than their white, Latino, Asian, counterparts?
Lisa: I think you're right. You've really sort of hit the nail on the head. It's not just about individual factors. Even the individual factors are impacted [00:15:30] by so many other things. So I think there are broad, structural, psychosocial, social, and contextual factors that are critically important to unpack to understand why young black MSM are more at risk and more impacted by the epidemic. These are really challenging structural issues that it's really ... They're daunting. Poverty, incarceration, violence, trauma that youth have experienced [00:16:00] growing up in their homes because of their racial identity, because of their sexual identity.