I recently spoke with Donna Futterman, M.D., the Director of the Adolescent AIDS Program at Montefiore Hospital in the Bronx, and Linda Wesp, FNP-C, a Nurse Practitioner there, about the increasing epidemic in adolescents and youth.
I'd like to start by citing the most recent stats on new HIV infections. The CDC reports that HIV diagnoses increased in young people aged 15 to 24, despite decreases in rates in older age groups. Men who have sex with men (MSM) aged 13 to 24 had the greatest increase in diagnoses from 2007 through 2010. Among young black MSM, new HIV infections increased 48% from 2006 through 2009.
Donna: I want to highlight that black MSM are being infected at a rate four times their percentage of the population. I think we are all somewhat perplexed as to why this is hitting them so hard. In 2007, Greg Millet looked at 53 studies and found that black MSM were not having more unprotected sex than white MSM.
But they did have a higher rate of STDs, and fewer of them were on HIV meds that can lower the risk of transmission. Also, fewer identified as gay. So I think the depth and legacy of racism is a factor here. Every social and health outcome is worse among African Americans, whether it's STDs, higher rates of high blood pressure, incarceration, etc. We're still a fairly segregated society, and people are more likely to have sex within their own community, so racism, poverty, like with like, higher rates of STDs, higher viral loads are all factors you could point to adding to the risk, but bottom line is that the overwhelming difference doesn't really make sense.
"One thing that I think is still very common is the 'visual AIDS test.' It's magical thinking -- I can look at my partner and tell if he has HIV."
In our research, African American youth were more likely to drink than they were to use pot. Among the kids we see in the Bronx, we're not seeing meth at all. So that's not a driver in this group. But one thing that I think is still very common is the "visual AIDS test". It's magical thinking -- I can look at my partner and tell if he has HIV. Doctors use it too, to see who they're going to test.
So is "safer sex" over for them?
Donna: I don't think "over" is the right word. It hasn't begun for this generation. In order to make a change as drastic as using a condom every time you have sex -- it's impossible to internalize that if you're not getting consistent messages from society, music, culture, churches, your family, and even the gay community. We haven't put the effort into it that is required. Remember, there is a new generation every five years and the youth in high school today have not heard the message of HIV prevention. They need constant reinforcement from multiple sources.
And it's a more complex message today. If you get HIV, we want you to feel hopeful. We want you to know we're down to a pill a day and you can live a normal life and have much less chance of transmitting this. So given that progress, how do you also let people know that they still don't want to get this?
Linda: And unfortunately, young people's idea of safer sex often doesn't include condoms. The tool they're using to protect themselves is the test. Clients say, "We both tested negative so we thought it was okay to stop using condoms." They may use condoms when they're not sure, but often they just ask, "Are you clean? When was your last test?" I've seen so many cases: "We're both getting tested every three months and he's only with me. So we're fine, right?" The problem with that statement is that he was not only with you, because you just tested positive. Regular testing is important, but we need to get the message out there that testing is not a condom -- it's not a seat belt. It does not protect you -- it's just a snapshot of what's going on. Love messes up all sorts of thinking. We see that a lot -- I trusted him and we had both tested negative. His last test was a year ago, but ...
Donna: We disentangled counseling and risk assessment from testing because testing is a health screen and should be treated like every other screen. If it's too cumbersome, it doesn't get done in clinical settings. So how do we reach gay men and let them know that regular testing is great, but it's not a prevention strategy? The scale-up of testing has to be matched by a scale-up of prevention programming.
Is peer pressure a problem?
Donna: It's less peer pressure than it is peer ignoring -- they just don't talk about it. There isn't peer pressure to avoid condoms, and there's a lack of pressure to use them and to have HIV be an open topic. This generation is growing up in a world in which HIV is not an imminent death threat, so it's not talked about.
Linda: But I still think they're afraid of it. There's enough stigma for them to be afraid of it. They don't want to be one of those guys who has to tell his partners he has HIV. And there's a lot of homophobia, especially in African American, Latino, and Caribbean families. Even those who have come out really young, their parents say, "It's fine if you're gay, just don't get HIV." They tell me, "I can't tell my mom I'm positive. And I can't ever date again, and I'm going to die by the time I'm 30." That's a big thing. They feel like they're a pariah and they never will meet anyone or kiss anyone again. The fear is there, but in a different way.
So if they are concerned, how do we get through to them?
Donna: We have to bring the word to young people with the same passion and power that we did years ago. It requires new campaigns all the time. The kids in high school now weren't there five years ago, so unless we're reaching them with a fresh, engaged message, it doesn't exist for them. We seem to be coasting on the fact that we've already told the gay community about HIV. But young people today didn't live through that. We have to reach them with powerful and compelling new messages.
"Part of the problem with HIV is we always want to do the new thing, so we never finish the job. Every few years there's a new group of kids. You have to repeat what's worked and get better and smarter."
Coke and Apple are the biggest brands in the world -- there's not a person on the planet who doesn't know what they are -- yet they refresh their messages all the time. We're expecting young people to somehow get this message without doing what it takes to deliver the message across many platforms. Part of the problem with HIV is we always want to do the new thing, so we never finish the job. With youth, by definition, you have to keep doing the same thing. Every few years there's a new group of kids. You have to repeat what's worked and get better and smarter.
Linda: We need to talk to young people and see what they think the message should be. If we think that we know what kind of message is going to work for a young black gay man, we're going to fail. We need to ask them, "What is it that you think needs to happen? It's messed up that your peers are being disproportionately affected." We need to talk about how unfair this is and ask them what they think their friends need to hear. Is it a social media campaign? How do we frame the conversation? I don't know. Let's ask them.
Donna: At a meeting last week, there was a debate about whether we should have role models of young people who have stayed negative. For a long time, the CDC hasn't wanted to fund things like that because that talks about young people having sex. And there's resistance from the HIV-positive community: "If you do that, you make us look bad." We haven't figured out a way to promote that you can be gay and grow up and never get HIV. The interesting new social marketing stuff is about positive people coping and being strong. Somehow we need to create equally powerful, "I'm gay, I'm proud, I'm gonna stay negative" messages. But the government won't let us talk about teens who are sexually active.
Are the schools doing their job when it comes to HIV education?
Donna: By the time they're seniors in high school, more than half the kids in America have had sex. But we're still constrained from giving accurate information about the details of sexuality -- I don't think that information is being given in schools today. Most young people that are newly diagnosed said they did not learn about HIV in school.
Linda: I agree. A lot of them go to community-based organizations where they get relatively competent sex ed. But MSM who don't identify as gay are missing out on that because they don't go to those places. I'm pretty sure that the things young gay men we see know, they didn't learn in school. They learn from wherever they've been hanging out, the gay-friendly spaces.
Did your newly diagnosed clients know they were at risk or were they uninformed?
Donna: Both. I don't think that most young gay black men are aware that they are the group that is at highest risk, and that the rates are going up. We're seeing mostly gay kids from the Bronx and there's often a surprise factor that they ran into this. I'm most struck by the fact that it's not an ever-present part of their life -- it's not part of their discussion. We've recently lost major social spaces like the Bronx Community Pride Center, so it's harder for them to find a place to talk about it.
Linda: I think a lot of them knew the risks. But they made decisions based on the fact that their partner had tested negative. That doesn't automatically equal reality, because when you get infected there's a window of time before you test positive. For a lot of the young MSM that I talk to, their positive test was one of many in recent years. They say, "But I don't need condoms when I'm with someone who I know is negative. I don't know how this happened."
Donna: There's this dual feeling among young people that "I'm invincible" and the flip side that HIV is inevitable. I don't think young people are empowered enough to know that HIV does not have to be inevitable for them if they're gay. It's not the outcome of being gay.
Linda: Exactly. I have clients who say, "Yeah, I figured this would happen" and others who say, "No, this was never supposed to happen. I've only ever had unprotected oral sex. How did this happen?" Whenever I hear that I question whether they're being honest -- and the truth comes out eventually. Or the condom broke. A condom breaking is a great way of making your doctor think you're being responsible. Actually, the people who always use a condom are the people who try to get PEP if it breaks.
Do young people know about PEP -- that there are meds that can prevent HIV infection if you take them immediately after an exposure?
Linda: They know about it -- we see them here. The hard part is getting them the PEP, because they're on their parents' insurance, and they're not going to tell their parents. We've had some challenging situations with minors. I had a 17-year-old whose boyfriend was infected at birth -- the condom broke and they definitely knew what to do. We had to figure out how to tell her mom. There are drug companies that will help, but this kid had a drug-resistant strain, so the regimen was very complex.
Are young people being infected by their peers or by older adults?
Linda: Half and half, I think. Older men may not be paying them for sex, but they're giving them housing, or they bought them a watch, or they're paying their cellphone bill. They're coming from families that don't have a lot of resources. So poverty is a huge driver. A lot of young men who come from very difficult situations are having sex for money. And they get paid more if they're unprotected.
Donna: Gay youth who have had to leave home are really at risk. Caitlin Ryan of the Family Acceptance Project found that young people who are rejected by their families are three to four times more likely to have adverse health and mental health outcomes. But she also learned that parents can be taught to embrace their gay kids, and that leads to better outcomes.
If you were the HIV Prevention Czar, what would you do?
Donna: I would concentrate the major resources in the cities and in the South. Half of the major metropolitan areas with new infections are in the South. I'd create new, fresh messages and programs for gay kids, and social spaces like gay/straight alliances -- places where kids can hang out and be comfortable being gay.
We need major outreach in the black churches, and I think that's growing. The NAACP has a project. I would do outreach to the music industry and other cultural forces to continue giving them messages that their lives are important and that HIV is real. Having fun condoms would be great -- you can't just stick them on the shelves and expect them to be sexy. And I would do another round of education for doctors about how important this is. I'll let Linda speak about some of the other social forces.
Linda: School, jobs, housing, food, and condoms -- in no particular order. They're equally important. And testing. If all our funding is going to social messaging campaigns without addressing those other problems, it's a waste of money. I can't imagine how that's helpful. If we're spending a million dollars on some billboards or some text messaging system and kids still can't find a place to sleep every night, what's the point?
The fact is, it feels good to have sex. They have low self-esteem, so how are they going to take care of themselves if this other homeless kid they met is the only one taking care of them? It feels good to have sex without a condom, and they think, "He was tested last month, and we're gonna make it through this together. I don't care if you have it or if I have it." It's the reality of their life.
When you're homeless and you feel lonely and your family kicks you out or if they're poor or drug addicts, stopping HIV isn't at the top of your list right now. It's surviving every day.