June 23, 2010
While the U.S. Centers for Disease Control and Prevention (CDC) estimates that men who have sex with men (MSM) account for just 4 percent of the U.S. male population aged 13 and older, the rate of new HIV diagnoses among MSM in the U.S. is more than 44 times that of other men. And if we dig a little deeper into these stats, we find that African-American and Latino MSM are disproportionately bearing the brunt of these new infections.
What are the contributing factors to these numbers? Is it a combination of homophobia, economic instability, racism, condom fatigue, naivety and a lack of culturally competent prevention approaches? Or is something else at play?
In an exclusive, roundtable discussion moderated by Kenyon Farrow -- activist, journalist and the executive director of Queers for Economic Justice -- we attempt to explore these issues, without pathologizing these two communities. We look at what is being done right, what is going terribly wrong and what is being overlooked in terms of HIV/AIDS prevention, education, treatment and testing.
Kenyon Farrow, Executive Director of Queers for Economic Justice
Kenyon Farrow: This is Kenyon Farrow, executive director of Queers for Economic Justice, reporting for TheBody.com. Today, we're having a roundtable discussing the rising rates of HIV transmission among black and Latino men. Participating in this discussion are Vaughn Taylor-Akutagawa, who is the deputy executive director of Gay Men of African Descent (GMAD); Sheldon Fields, who is an associate professor of nursing at the University of Rochester Medical Center, in the School of Nursing; and, last but not least, Francisco Roque, the director of community health at New York City's Gay Men's Health Crisis (GMHC).
I want to thank you all for joining me. I want to ask a question about what's not working. Most of us are familiar with the various statistics that have come out in the last couple of years related to rising infection rates among black and Latino men who have sex with men. Last year, the CDC released some data showing that MSM in the U.S., in general, are 50 times more likely to have HIV than the general population. And we know those numbers are being largely driven by men of color, particularly black and Latino men who have sex with men.
I first want to ask Sheldon: What do you think isn't working so far?
Sheldon D. Fields, Ph.D., R.N., Associate Professor of Nursing at the University of Rochester Medical Center -- School of Nursing
Sheldon Fields: In terms of what's not working: Clearly, we're not being effective at getting the message out to a new generation of MSM about how to protect themselves. We're not doing a good enough job. The results speak for themselves. And in that vein, in terms of the types of research that we are doing, we talk a lot about innovation in health science and research. But then the NIH [U.S. National Institutes of Health] and the CDC are not the first ones to really fund true innovation. And a lot of innovative things that we can do are at the very, very basic community level -- that we have not yet been able to connect the community that's most at risk with academic institutions, in order to jointly partner to do the types of research that we probably ... well, not even probably ... that we do need to be doing to produce better outcomes.
At the moment, we keep doing the same thing, and that's the definition of insanity. We're doing the same thing; we're not getting any different results.
Kenyon Farrow: I'll ask also Vaughn and Francisco to weigh in on this, but Vaughn first. As a person, as Sheldon mentioned, who provides community-based prevention for black, gay men in New York City: From your perspective, what do you think isn't working?
Vaughn Taylor-Akutagawa, Deputy Executive Director of Gay Men of African Descent
Vaughn Taylor-Akutagawa: We don't have real conversations that are tangible for the people that we reach. There's no concept about threat personalization. We have to balance the unique conversation between talking about HIV as something that you do not want to get with the sensibilities of those who are living with HIV. And often, the message about living a healthier life, with access to services and a chronic managed disease, makes the threat of HIV not seem imminent.
We don't have classes in which we can actually talk about effective harm- and risk-reduction acquisition for young men, or for men across the continuum. We get them in a room; we mention, allude to, sex; but actual concrete demonstrations about how they negotiate sex aren't there. If we follow what our funders want, our funders want us to pretend as if male negotiation of sex is verbal. And it's generally not. If you look at any level of data, it's assumptive, inferential and people just do it. If you look online, people say, "What's up?" They give you directions to the house that they are quick to unlock. And then there's activity. There are no other discussions.
So we're stuck. And particularly for our gay organizations, serving gay men, we have to do an interesting dance around how do we, as peers, interact with people in the community, but still maintain professional boundaries.
Kenyon Farrow: Francisco, from your perspective at GMHC: What do you feel isn't working?
Francisco Roque: I think there are a plethora of things. And I think that I really would like to echo, certainly, the importance of us developing homegrown interventions that are developed with men of color at the forefront. I think that part of the success that we can attribute to prevention efforts in the '80s, and the decrease among white male infections in the gay community, is the result of an openness in the way that prevention was executed.
Francisco Roque, Director of Community Health at New York's Gay Men Health Crisis
Gay, white men had many opportunities to insert themselves in the creation and design of innovation and of these interventions that were disseminated. There was an openness to how those were created and distributed. I think that what that does, which is essential, is it gives community a sense of mattering. When men are themselves able to assert agency in a way that they are, in fact, part of the solution and not part of the problem, and they can see themselves as agents of change, I think what occurs with that sort of a dynamic is that it instills in folks a sense of mattering in the world. You see the impact that you have as an individual, whether you're an HIV-positive person or not. You suddenly see your impact, and so you look to matter. You look to gather more evidence of mattering in the world.
I think that we have created a paradigm where, now that HIV is targeting a different community, where there's been this shift, we begin to deal with folks as though they are just broken, solely. And the industry has become more and more professionalized. There are advantages to that. There are advantages to seeing more and more folks with Ph.D.s doing this kind of work.
But there are also disadvantages, because it limits community from being involved in the solution, and in the ways in which we address HIV prevention. And so I think that we need to urgently look for ways to include community, and include black and Latino men in the building of solutions.
Kenyon Farrow: We hear so much talk in this day and age about syndemics, or about the sociopolitical and economic factors that are driving the epidemic. I hear each of you speaking to issues where ... Sheldon mentioning connecting the most vulnerable populations to research, and research institutions; Vaughn talking about needing to expand and have more interventions that are focused on communication and negotiation of safer sex and harm reduction; and then Francisco talking about community involvement in the creation of interventions. All those things are important and I think can work together.
But there's so much discussion now about looking at the impact of housing instability and homelessness, thinking about the impact of homophobia on the epidemic for black and Latino MSM, and joblessness and the economy, and so on and so forth.
So I just want to ask you from, again, each of your vantage points: How do you see these sorts of larger structural issues as impacting the epidemic? And how do you approach your work with that lens? Or if you, in fact, do approach your work with that lens? So we'll go back. We'll start with Francisco on that one.
Francisco Roque: As we look to expand upon what we just said: I think that, absolutely, there are a variety of other factors. I think that we don't really look at substance use in the ways that we could be. I think that there is a huge lack of culturally appropriate and gay-sensitive substance use prevention programs that exist, and that folks can access. I think that we absolutely need to deal with alcohol and other substances in ways that we have not, and really look to incorporate that into our prevention efforts.
I can't tell you; I mean, it's almost nine out of 10 times that folks report that some substance was involved in their decision-making, or in the sex that they're having. And that seems to be more and more the case anecdotally from the folks that we're servicing.
And so I think, absolutely, we need to look there. I think we need to be very real, and look at drug laws. We need to absolutely see what is the impact of drug laws and incarceration, and how we've created these transient communities, where folks come in and out, and the impact that that has; and design interventions that look to address that, and look to work inside of that.
Certainly, we need to look to have impact at a policy level, and change some of those factors. But I think, in the meantime, we need to have some really comprehensive short-term solutions that are addressing the reality that these folks are dealing with. So I think that we need to look at those two issues, in particular.
Certainly, if I were to list a third, it would be access to condoms as something that we assume. I think it's great that the City [New York City], in particular, makes sure that there are condoms readily available in certain locations. I would love to see City condoms in all liquor stores, for example. I think that, in certain neighborhoods, you don't have a local health clinic on every corner, but you absolutely have a liquor store on every corner. I think that it would be really advantageous for us to really push for those types of outside-of-the-box approaches to really increasing access to condoms, as well, and really begin to partner on pressuring legislators into thinking outside of the box and creating some policies around working with folks. You know, as part of getting your liquor license, you have to agree to distribute condoms in your liquor store.
There are all kinds of innovative things that we could be doing. But it seems as though the climate in which we're in has dwarfed our ability to think outside the box. We shy away from that type of innovation, and follow suit and begin to sort of all do simply the prescribed interventions that some of us mentioned earlier.
Kenyon Farrow: Sheldon, from where you sit as a researcher -- and I have been in several rooms with you, in different occasions, and have raised these various issues about the kind of social and cultural and political context in which the epidemic is taking place. And you're in many of those rooms with other researchers much more than I am.
And so, the question is: In terms of syndemics or these other kinds of terms that people are using to look at structural issues driving the epidemic, how much is that really rolling out, in terms of reshaping a research agenda that's looking at those issues, versus individual risk factors?
Sheldon Fields: You're talking about, sort of, those things that really create this endemic effect. We cannot ignore the fact that poverty impacts this. The other things that people do in their lives ... People are not just simply focused on whether or not I am, or am not, going to be at risk for HIV -- if I don't have a home, a place; I don't have food; I don't have a job. Some of that is playing out a little bit more. Now, if you look at even our economy: We talk about jobless rates.
And then you look at jobless rates in people-of-color communities, and it's always exponentially higher than that of the average, or even than that particularly of the white community. So when you don't have access to resources, and you get into a desperation mode, there's a whole other thought process that goes on there ... or not ... that one is subjected to. We need to infuse into our research paradigms a different way of thinking about how to approach our research. This very linear way that we have in thinking about how to do research as only -- like, the randomized clinical trial being the gold standard -- I don't think is necessarily, in this context, working very well.
We need more interdisciplinary teams. As a researcher who has a health care background, I'm very versed on that particular piece of the research -- not so much in terms of sitting down and talking to an economist, or adding an economist to my research team, going, "How do we look at some of these things from a financial standpoint?" Or sitting down and talking to a social worker, or even a medical anthropologist, who can bring a different view to the research team. And then we can start to incorporate some of these other things that have not been traditionally incorporated into research, as we search for answers.
Kenyon Farrow: Vaughn, for you at Gay Men of African Descent: How are you all thinking about the social and cultural factors that are driving the epidemic? And how is that impacting your work there?
Vaughn Taylor-Akutagawa: We do that by making sure that there's a distinctive syndemic orientation. We look at the interplay of mental health, substance abuse, domestic violence, HIV/AIDS diagnosis and threat for getting it, and homelessness, and what that impacts on people's decisions. We make sure that all of our mental health services practice an adaptive conjoint methodology, so that there are clear and consistent trade-offs for what the client wants.
We hear a lot of conversation about meeting the client where they're at; and I think we do a great job. The challenge, without the adaptation of home interventions, is to not leave the clients where they are. So we look at making sure that everything we do is health literate. We're clear about what decisions the client can make and what's real for them, and how to actually help them move to a position that's going to define better health.
We're also clear about defining what a healthy, gay man looks like. And once that standard is set, we don't deviate at all. We say this is what you should be; let's see how close you can get. And help them make sure that they have the other resources available to make sure that they maintain that status.
Kenyon Farrow: Now, I want to move on to a couple of different kinds of trends in HIV prevention that we're hearing more about. As many of you know, the stories in the paper over the last couple of days have named a new HIV test that is able to test new infections faster than the test that we've currently used most readily, which tests for the HIV antibodies; and people seeing this as a way to test people earlier and get folks into care sooner, as a way of stemming the tide of the epidemic.
We hear a lot of folks talking about the community viral load, right? So, in a particular, either geographic, or community, or sexual network, or amongst, say, black or Latino MSM -- if we get people into treatment and lower the overall community viral load, how will that potentially decrease new infections?
And we hear a lot of those different components under this rubric of test-and-treat, right? As a new medicalized intervention model. So I would just like your opinion about the test-and-treat model as a potential way to decrease new infections, and whether you see it as useful, or where you see different problems with it. We'll start with Vaughn.
Vaughn Taylor-Akutagawa: Well. It's interesting. Whenever I hear the test-and-treat concept, my first thought is to ask the question: What happened to primary prevention? It seems that we've just given up on keeping people uninfected.
While I think testing and treating is a great medical application of reducing community viral load, it does not in any way address access-to-care services from a client's perspective. Almost everyone said, "Let's partner with a medical provider, and things are going to happen. OK." Most of these testing services here in New York City have no clear mechanism for connecting someone who turns up positive to services after 9 p.m. at night. If you do a quick analysis of Web sites and where people meet, most of the time they meet under risky behavior after 9 o'clock at night.
The barrage of paperwork in getting someone access, too, is intimidating. So while it's great to say that we're going to get people in there, and we're going to reduce the community viral load, most people can't give you a clear definition of what they consider "community." And for those who aren't out as openly gay or bisexual, they don't know the names or the status of their partners. They don't even ask. They barely ask about condom usage.
So it's one clear platform. But I think there need to be more things used in conjunction with that to actually think about seriously reducing community viral loads.
Kenyon Farrow: OK. Sheldon?
Sheldon Fields: As a medical approach, yes; we have no doubt that if you test people, they get to know their status. And once they know their status, then one would hope that they would engage in preventive behaviors, or be brought into a system and taught preventive behaviors so that they do not pass their infection onto anyone else.
We also know that if we put people on antiretroviral medications, we decrease their viral load; we [decrease] the efficiency at which they are able to pass HIV infection onto another potential partner. Those are medical facts. We know that.
I agree with one of the things that Vaughn just mentioned, though -- which gets us into the whole: Do we test everyone for HIV? And I say, we only make HIV testing mandatory if there's an absolute guarantee of access to medical services. I think it's unethical to test someone, give them a diagnosis, and not provide them with treatment.
Now, as someone who also is very much interested in health policy, and is currently doing a health policy fellowship: There was a reason why a lot of things pertaining to HIV were not folded into health care reform. Because we cannot yet guarantee that the primary care workforce, those initial front-line people who are going to intake a lot of people into the medical system; we cannot assure that they have the knowledge and the ability to deal with people who actually have HIV. A lot of those providers have never had training in HIV, beyond what they got in either their medical program, physician assistant program or nurse practitioner program. They have no depth of knowledge.
Until we are able to provide that depth of knowledge to all primary care providers, we just cannot throw open that floodgate. Because you're going to have people who then are going to be severely mistreated and abused once they come into the system by people who just don't know any better. And once those people are turned off to treatment, it's going to be very hard to get them back in.
Kenyon Farrow: And Francisco, your perspective?
Francisco Roque:If you were to ask me, I would absolutely say to you I would want as many people as possible tested and treated. Right? That's absolutely certainly the case.
I think that we do a disservice to think that we can create this test-and-treat agenda as preventionists, and that we'll be able to successfully bully our way into having communities of color tested and treated. Right? There are certainly cultural factors at play here. And there is a lot of resistance in folks. Still, there's a lot of distrust of the medical institutions, and care.
Again, this takes me back to the urgency around including community in the development of interventions and messaging, and the development of our approaches. We cannot expect that folks will just come along and begin to test and treat at higher numbers, because that's how we're promoting our services, and because funding streams are dictating that we simply test and treat.
I think that it becomes really important that we look for ways in which we can develop interventions that look to actually have an impact on a cultural level, on the dynamic of folks who are not looking to be tested and treated, as well. We certainly have access to care issues. I can certainly speak for myself; something almost needs to be falling off before I go to the doctor. That's the case for most men, and that's the case for, certainly, most men of color.
And then it becomes even more complicated when you think about the stigma related to HIV and homophobia, and what it actually looks like to access care consistently -- and the fact that we are conditioned to medicate ourselves with drugs and alcohol when we are in crisis. That becomes our go-to. Our go-to is often not to get into mental health services. It's just not.
Until we look to create some creative ways to address that, and model behavior for folks, and offer up options that meet people where they're at, we will not successfully test and treat high-risk individuals within our communities. It's just going to be extremely challenging. And we do a disservice to not address that tertiary area first.
Kenyon Farrow: One of the things I keep hearing a lot about gay men, in general, and the increase in new infections -- and particularly, people are often saying that young, gay men just didn't experience the mass death of friends and lovers, and so on and so forth, in the 1980s and the early '90s, and so they don't have a relationship to the disease in the way that men who are older, who were sexually active adults at the time of the early part of the AIDS crisis, do. We hear that myth a lot, that there's a disconnect, that people suggest that having that experience of so many friends and lovers and folks dying before the antiretrovirals, seeing a lot more people with KS [Kaposi's sarcoma] and any of the other markers of disease progression without medications, [makes a difference]. And so, I just want to ask you: Do you think that that's true for young, black and Latino, gay men? That they don't have a relationship to the disease in the same way, because of HAART [highly active antiretroviral therapy]?
It's open for anybody to take.
Sheldon Fields: I'll start. No. I think it's an oversimplification of the argument. While, yes, they may not have had a lot of personal experience with people dying, they most certainly have had a great deal of exposure to people becoming infected, and what that means for their life.
The medications are better, but the medications are still not harmless, in terms of the types of side effects that people get. We're talking about a generation who has not ever not known the presence of HIV in their life. We're talking about them being exposed to this knowledge at all levels within their schools, within the general media.
I do not think it's a lack of knowledge. There's another factor here. Well, there are several other factors here. But it's not simply just a lack of knowledge, or a lack of experiential knowledge related to having had friends die. I don't buy that argument. The youth that I research, when I ask them about why they do some of the things that they currently do that we know still places them at risk, I get a lot of, "I didn't think about it," or, "In that moment, it just didn't seem that important." I get a certain amount of, "I feel like it was almost going to happen to me, anyway. So I might as well have fun."
And then, of course, as was brought up earlier, there's a great deal of substance use and abuse that is going on that alters their ability to respond to certain situations in the most coherent manner ... primarily of which, in the groups that I study, is a great deal of marijuana use. People just take marijuana for granted -- like, "Oh, it's not a drug that alters your thinking." And it really is.
Kenyon Farrow: Francisco?
Francisco Roque: I would echo: absolutely not. I think that while that is true that they did not certainly grow up seeing all these folks die around them, I think what is different about this generation is that they did, however, grow up with HIV. And so it is not a generation where HIV came along, and then they were impacted by it, as an occurrence. HIV has been with them all their life. They have been brought up around that. They have been brought up with the culture of use condoms, and the safer sex, and the messaging.
It's fascinating to me when I'm asked, "Well, what's the disconnect? What's going on with young MSM, or young, gay men? What's going on that they're not getting it? The information is out there."
I almost always turn the question around to whoever is asking and I say, "Have you ever had unprotected sex?" And nine times out of 10, the answer is yes. Sometimes they choose not to answer.
Kenyon Farrow: Which means yes.
Francisco Roque: But nine times out of 10, the answer to that question is yes. See, we look to be different from folks, often. We often look to see how we're different, before we look to see how we are the same.
The truth is that young, gay men of color are having unprotected sex for the very same reasons that everyone else is having unprotected sex: for love, for connection, for intimacy, for touch, for sex, for pleasure. There's nothing different that's happening. And we know this. More and more studies are beginning to show us that, in fact, gay men are practicing higher rates of safer sex than heterosexual folks. We know that, in fact, gay men of color are engaging in higher rates of safer sex than their white, gay counterparts.
And so there's enough data to suggest that it's the pool in which we're swimming. If there's more infection, then you're more likely to be exposed to HIV, given who you're having sex with. And so, given that, we need to begin to relate to people differently, youth and otherwise. We need to begin to see people as solutions, and not problems.
We continue to relate to folks as though they are doing something wrong or different than other groups. I think that that sets up this stigmatizing dichotomy that really is counter to what we are trying to do. And so I feel that it's very important that, in our prevention efforts, we look to lift people up and to highlight what is working, and to continue to give people information so that they can make informed decisions.
But under the framework of there's nothing wrong with you, and in fact, what you're doing is not different from what others are doing. I feel like that's missing. And oftentimes, it's interesting because we certainly do it with people of color. But then when we narrow it down even further to young people of color, we often look to be different from folks. And I just think that that is one of our biggest downfalls in HIV prevention.
Kenyon Farrow: Vaughn? Your thoughts?
Vaughn Taylor-Akutagawa: I'll echo what everyone else says, and add, briefly: Again, it's one of those research questions that are incomplete, that we've never really studied. We make an assumption that somehow young people don't get it. But we know that they can negotiate sex; they can negotiate resources; they learn enough to size up older men to use them for resources; they connect for various different reasons.
But we as men, or in the field of science yet, cannot definitely say, when a man has sex it's for this reason, XYZ. And we can even exclude biological exuberance. To say that they haven't experienced HIV death puts them in a box and, particularly for urban kids, excludes the reality that they've seen death. They've seen people get shot. People in New York have lived through 9/11. They see death left and right.
The way they may experience it, or choose to express it, may be different. But we never actually look at the number of support groups you have for people to cope with death.
We have kids that went through horrible situations that would make my hair turn gray ... and it's everyday life for them, because they know nothing different. If you really want to assess what messages have made it, we need to ask men across the continuum.
As a 42-year-old man, I can tell you: None of the messages I've ever seen have ever spoken to me, in any way whatsoever. Unless the guy was cute, and I can tell you what he looked like, I couldn't tell you what was on the message.
Kenyon Farrow: Funny.
Vaughn Taylor-Akutagawa: I'm being honest.
Kenyon Farrow: I know. It's real, right?
Francisco Roque: Mm. Yeah. You're 42? [Laughter.]
Kenyon Farrow: I just have one last question. What do you think is working? Or, where do you have hope, despite all the damn-it's-bad data and everything else that we see. From each of your vantage points, what about black and Latino, gay men in relationship to the epidemic -- or not -- gives you hope about the possibilities of stemming the epidemic?
Sheldon Fields: Oh, I'll answer that one. There was a comment made earlier about not just leaving this up to Ph.D.s to study. And while I agree with that, I'll also disagree with that, to say it's the type of Ph.D.s that we had doing that research. As somebody who is an obviously prepared researcher, who also happens to be a gay man of color, I can tell you that my greatest hope is now that we are starting to purposefully assert ourselves in the national research agenda with things like the Black Gay Research Group and the HPTN [HIV Prevention Trials Network] scholars that have just been oriented to their program, that we have more of a connected way to assert ourselves in health policy with NBGMAC [National Black Gay Men's Advocacy Coalition].That gives me hope. Because once we start pushing this agenda and start being able to sit at the tables where decisions about research funding and policy are being made, we have a much better chance of doing the types of research that are truly for us and by us. And we stand a much better chance of that research getting at some of those questions that other researchers just have ignored.
Because one of the things that I know for sure: If you are not at the table, you are more than likely on the menu. And that's never a good thing. So, I have hope.
Kenyon Farrow: Francisco?
Francisco Roque: I, too, have hope. I think that there are a lot of things coming together. I say this a lot, and I run the risk of being cheesy and corny and all that. Call me the eternal optimist, but I still see beauty in my community. Whether it be in the House and Ball community, or outside of the House and Ball community, and when I look at communities of color overall, I see the creativity, and I see the innovation, and I see how gay men have been wrestling with this, and coming up with creative solutions.
I think that I am hopeful that we will continue to lift people up. And much of the work that we have been doing here at GMHC over the past few years has really been around lifting people up. I think that that is evidenced by our "I Love My Boo" campaign, and "My Son Is My Life." We are really looking to deal with people where they're at, and highlight what's working, and the resiliency within individuals and communities, and ways that support them.
I just think that that's key. That's key. And again, I want to just echo that I think it is critical for us to allow opportunities for folks to be involved in the process in ways that they have not been involved. And so for me, I'm absolutely hopeful, and I'm absolutely inspired by what I see. I think that the next step is to really get real about what's happening. We need to really talk about serosorting. It's occurring in our community. Folks are being creative. Folks are coming up with solutions. Folks are looking for ways to protect themselves, to lower their risks. Folks are prioritizing themselves. And they're doing the best that they can with what they've got.
I think that while we are continuing to develop approaches that work for our communities, we need to also highlight what's working and continue to lift people up. Because certainly, folks are coming to the table and wrestling with this in innovative ways that we need to celebrate.
Kenyon Farrow: OK. Vaughn, what gives you hope? Or what do you see is working out there?
Vaughn Taylor-Akutagawa: What's working is that there are now enough educated black and brown people to go from the paraprofessional level to the professional level. We have inputted every possible means. We're actually listening to our community, and actually creating effective partnerships that are both participant-oriented yet provider-efficient. We show incredible flexibly and adaptability to meet the new funding needs. And we're surviving, regardless of that there are eight standing black agencies left, agencies to serve black, gay men; we're still here. We're still adapting and getting stronger. So that gives me hope.
Kenyon Farrow: Excellent. That's it. I want to thank each of you for taking the time out to talk to us at TheBody.com today.
This transcript has been lightly edited for clarity.