The Rising HIV Rates Among Young Women and Girls of Color: What's Going On? Part One
Even though African-American women and Latinas ages 13-24 account for only 32 percent of the U.S. female youth population, they account for roughly 83 percent of new HIV infections among young females in the U.S. In addition, black women account for 62 percent and Latinas for 19 percent of cumulative AIDS cases among women 13 to 24. Numerous studies have found that the major mode of transmission in this population is heterosexual contact.
What exactly is contributing to these numbers?
In this exclusive, two-part roundtable discussion, we attempt to explore the pressing issues that are increasing HIV risk among young girls and women of color. We look at what is working, what is going terribly wrong and what is being overlooked in terms of HIV/AIDS prevention, education, testing and outreach.
Participating in this discussion are Tracie Gardner, Founder and Coordinator of the Women's Initiative to Stop HIV/AIDS NY (WISH) at the Legal Action Center; Jennifer Irwin, Deputy Executive Director at Health and Education Alternatives for Teens (HEAT), and Co-Founder of the Young Women of Color HIV/AIDS Coalition (YWCHAC); and Claire Simon, Co-Director and Co-Founder of the Young Women of Color HIV/AIDS Coalition.
Kellee Terrell: The CDC [U.S. Centers for Disease Control and Prevention] released some surveillance data showing that among teens and young women 13 to 24, rates of HIV infections are going up. We also know that those numbers are being largely driven by young women of color, especially among African Americans.
The first question I want to throw out is to Jennifer. What is not working, in terms of prevention toward this demographic, looking at the work you've been doing at HEAT?
Jennifer Irwin: What we're seeing in terms of young girls that come through our doors is a couple of things. One, in terms of prevention -- and I guess this determines whether or not you view testing as prevention -- but a lot of the young women that we deal with are hesitant to get an HIV test. One reason for that is a lot of these young women don't view themselves at risk, in terms of their behaviors. A lot of them still tell themselves "I'm not a young, gay male. I'm having heterosexual sex, therefore I really don't need to get tested."
Another issue that comes up with a lot of young women is condom use. First, there's sort of an assumption amongst these young girls that if the male doesn't want them to use a condom, they don't need to use a condom. And then for those girls who want to use condoms [even when their partners don't want to], they are having serious difficulty negotiating condom use. With our clients, a lot of them have partners that are considerably older than them, and that creates this whole power dynamic that spawns fear, on their part that they'll be rejected, or they will be perceived to have something and not be quote-unquote clean if they use a condom.
Kellee Terrell: Tracie, just coming from WISH, what are you seeing that is going wrong on a policy level?
Tracie Gardner: Well, at WISH we help policymakers who are responsible for funding and programming that would address the epidemic among young women understand the challenges and the dimensions of the problem. They include the issues that Jennifer spoke of, but at the policy level, it comes down to the politics of who makes the most noise; who has the ear of the decision makers; who's perceived to be at risk versus who actually is; and their ability to articulate in the policy arena. [Some of the issues we see] are policies that are in place that don't really work. For example, the siloing of HIV from other health and social services that young women use, so there's almost an AIDS, Inc., if you will, that exists completely outside of the realm of other issues that young women care about, need, depend on.
And we miss logical opportunities to integrate HIV testing and the idea that knowing your status is part of good health. One of the ways that we do that that's problematic is the bifurcation between HIV services and STI [sexually transmitted infection] services, which means that we're having young people getting treated for STDs [sexually transmitted diseases] -- and certainly in the areas in the city where there's high prevalence of HIV, there's also high prevalence of STDs -- but we have separate systems, separate funding, separate programming that doesn't fully integrate the awareness of sexually active young people. And the opportunities, when they come into care, are opportunities that have to be fully exploited in order to really take advantage of the opportunity. And we don't have things in place that do that.
So there's that, at the program and ground level, and bubbling up to the policy and legislative and funding level. The funding is also siloed, and so it makes it hard to deal with different components of people when, in fact, we need to be dealing with people's holistic self. Everything that goes on below the bellybutton is what we should be attending to, in one fell swoop, in one visit, in one engagement -- if not repeated engagements.
Kellee Terrell: Claire, Tracie just brought up a really good point: Who cares about young girls? Who is advocating for them? Who's the mouthpiece for them?
Claire Simon: I think for the women who are advocating for younger women, it's because: One, they come to us. And they don't feel that they have a voice in this process.
I also feel like many providers don't think young people should be having sex. So, as a result, they don't address the issues that a young person may come to them with. And the messaging that they're getting from many adults about sex is not to do it. But then the mainstream media tells them to "do it all the time" and "this is how you're going to get accepted." From all the teenybopper shows, to anyone; there is sexuality, there are things that are in their face, but no one's talking about it to them.
I think the beautiful thing about the coalition is that we have a group of young women who are interested in these issues, who are talking about it, who are sharing the message, and giving voice to it from a youth perspective. That's very powerful and impactful. Because having a peer who can say to you, "Have you thought about this? Have you thought about that? Let's talk about these issues," can propel other young people to feel comfortable talking about it.
Kellee Terrell: Jennifer, when looking at sex education in this country, do you feel like it incorporates those contradicting attitudes?
Jennifer Irwin: It depends. The whole sex-ed thing is an issue in itself. But I think one of the problems in New York City with sex-ed is that, although there's a curriculum, it's often not taught in the schools. It's really at the whim of the principal -- if the principal feels comfortable having it taught, it gets taught. And because there is not an emphasis on sex-ed at all, a lot of teachers either rush through the curriculum, or they allot one health class to it.
In my program, we do a lot of workshops in high schools and middle schools. But even in that there are issues. For example, there are plenty of times when a teacher will call us and say, "We'd really love for you to come do an HIV 101, or an HIV/STD workshop." And they will come right out and say, "But listen. This is not really OK with the principal; we're going to kind of do this on the sly. Don't bring condoms. Don't do a demonstration about how to properly wear a condom."
So, sure, you can talk about sex. But you can't actually show youth how to protect themselves having sex.
I think that part of it is that the teachers out there -- those that are supportive of it -- are up against a lot of battles in their schools with parental involvement. There are a lot of parents making noise, a lot of principals that aren't necessarily supportive of it. I also think a downfall in our current curriculum is that oftentimes it doesn't take into account cultural issues, religious issues, and other important issues that impact young women living in New York City, such as different social and economic issues that they deal with around sexual education in school. I think that kind of rubber-stamp, one-size-fits-all approach doesn't work as well when you have such a varied population of young women.
What I really want to stress as well is that sex-ed needs to start at a much younger age. That's part of the big problem: A lot of the youth who are part of our program will say that they never got it, or they got a few classes in it in a health class. Or they'll say that they didn't get anything until high school. We're having young women who are HIV positive at age 12. And so there is clearly a huge disconnect, in terms of these young women getting sexual health information, either at home, or at school, or in another forum. It's just not happening in an effective way at all.
Kellee Terrell: Jennifer, earlier you made some really great points about younger women sleeping with older men, and the power dynamic that happens: not being able to negotiate condom use; self-esteem and media messages. Can we talk a little bit more about that?
Jennifer Irwin: Issues around power and control, whether it's with our clients who are HIV negative or positive, I think are some of the biggest issues that the bulk of our young girls face. Whether they're conscious of it fully or not, their behaviors definitely point to a huge lack of self-esteem and a lot of powerlessness in relationships that they're currently in. And that's even if they are with young guys who are around their age, although the bulk of our girls are with men that are considerably older, sometimes double their age.
I think one of the biggest ways that we see the negative impact of this is with our HIV-positive girls and disclosure of their status. A large portion of our girls do not disclose their HIV status to their partners, for several reasons. I think one of the biggest ones is the fear of rejection by their partner. There's concern around being rejected by their partner. A lot of our girls have faced a lot of trauma and violence in their history and their past; everything from sexual assault, molestation to rape. So on one hand, there's an inherent worry about violence.
I also think that a lot of these young girls spend a lot of energy on what they feel is trying to find a good man, or a good guy, to be with, and the concern that there are not a lot of good men out there for them. So when they've got one, they need to do whatever it takes to protect that. And so I think a big piece of that is the feeling that they're scared, or don't want to disclose their status.
Now tie mental health issues into it. When we talk about what's affecting these young women, a large bulk of the girls in our program suffer from major depression and post-traumatic stress syndrome due to the trauma of their past.
In terms of condom use, I think some of our girls think that if they don't wear a condom then it will give their boyfriend the impression that they've got nothing, that they don't have any diseases, that they're "clean." They are worried that if they ask their boyfriend to use a condom, suspicions will come into his mind that she's got something.
It's that really kind of scary, warped way of viewing it. It's not him saying, "Oh, I want to protect you. I want to protect myself." It's the absolute opposite. It's: "Why do you need to wear a condom? Is something wrong? I thought you were clean. You told me you were clean."
There's almost this kind of rite of passage of girls: By not using condoms, they are proving to the men that they're with that they don't have anything. Because they're scared that by using a condom, a red flag will be triggered, and they are going to be asked a lot of questions they don't want to have to answer, particularly our positive girls.
Claire Simon: As I listen to Jen talking, I'm like, "OK; these are some of the same issues that grown women face." Is it learned behavior? Is there a manual that we got that got input in our brain at birth, to say that this is how we're supposed to behave, and these are the issues? And how much of it is media sensation around black women, or women of color, not finding partners or not having adequate partners?
We haven't addressed this heterosexual epidemic in any way, other than the fact that we're telling girls to use a condom; negotiate condom use. And we're not talking about sexuality. We're not talking about power dynamics.
Again, this is about the social factors that we talk about, that are fueling the epidemic. Because if we have young women who feel like: Once I enter a relationship with a guy, I have no power. And I have to relinquish whatever power I have because I don't want to lose him --
Kellee Terrell: And you don't want to lose him because everyone keeps telling you, "You have got a good man. What are you doing? Why can't you keep a man?" It's a very Steve Harvey-esque mentality.
Claire Simon: Yes, it is.
Jennifer Irwin: A lot of our girls are very economically dependent on these older men.
Tracie Gardner: Right.
Jennifer Irwin: These older men are the ones who buy them the clothes they need, buy the cute purse, pay for them to get their nails done and pay for them to get their hair done. They cannot get that from anywhere else. They can't get that kind of money at home; it doesn't exist. They're young. They may not have their own job and so it's very attractive when you have some guy handing you all this stuff. And essentially the payback is, you're having sex with him.
Tracie Gardner: Right.
Jennifer Irwin: And so they're willing to give that up to get what they can get absolutely nowhere else.
Tracie Gardner: So let's look at what is power, really? We talk about power in terms of girls and women being able to negotiate safer sex, being able to negotiate condom use. That means you have to negotiate putting a condom onto somebody else's organ. It's not that you're negotiating condom use for yourself; you have to quote-unquote try to convince somebody to put a sheath onto his penis. And I'm not even going to talk about the female condom.
Kellee Terrell: That's a whole other conversation. [Laughs.]
Tracie Gardner: A whole other discussion. But in terms of the power discussion, what if, in fact, you are powerful, in that you feel like you make the decisions about the man that you're going to sleep with, and whether you're going to use a condom with him? What if you've got the power in deciding? But we know this is not the case for so many of our young women, and yet we've grown up with prevention that presumes and assumes, and that incorporates the idea of giving women power. We're asking -- we're needing -- power over primarily an organ that we don't even have attached to our body.
The other piece of the discussion, of course, that's always been missing, long been missing, is: AIDS, Inc., does not know what to do with heterosexually identified men.
Kellee Terrell: Which was my next question.
Tracie Gardner: AIDS, Inc., does not know what to do with sexually active men who are not exclusively gay -- let me put it like that. Unless you are exclusively gay, out, or even a little bit kind of halfway what society labels as "down low," AIDS, Inc., doesn't know what to do with black men's sexuality. It just doesn't. We don't have the right studies for it. We don't have the right access for it. We don't have any idea, except prison -- which is my whole other issue -- of where you can have an opportunity to engage men around health literacy, right? Sexuality addiction that plays into factors; sex that happens with men that does not mean, or does not reflect, an orientation. We don't have the places to have those discussions. The good thing about what we're doing with the girls is that we're able to have those venues to have that discussion.
But as long as we're able to access health care, mostly around our reproductive organs, and men don't have a similar place where they even ever have to come into care, unless they're coming into care for prostate cancer -- and that's a sure sign that they've come too late -- we've been doing one-hand clapping for a long time. So it's not even about what works, or what doesn't work; we're still trying to figure it out.
Kellee Terrell: Jennifer, the work that you do at HEAT: How difficult is it for you to get straight men of color engaged?
Jennifer Irwin: It's difficult. I think it's very similar to what Tracie just said. I think a lot of the work, what happens with a lot of agencies not unlike our own, is that you have these three populations that you reach out to, or that end up walking in your door: young men who have sex with men, transgender youth and young women of color.
I think this is a failing on our part as well, that we don't put in the type of energy or time or resources around reaching that particular population unless they are partners of our young girls, or unless they come to some of our events, and may come back for services. I think a lot of that speaks to a couple of things we've been talking about so far today. I think a lot of it speaks to the way the funding is stratified out there. The grants that come out now are either grants that serve young men who have sex with men or grants to serve young women of color. I've been here eight years; I've never seen a grant come out to serve young heterosexual men that we could even apply for.
Claire Simon: And there hasn't been.
Jennifer Irwin: There hasn't been. I think the assumption is that they get locked into female-centered funding as partners, quote-unquote, of the female girls. So I think that's a big piece of it.
I also think, like Tracie said, it's who is yelling the loudest, who is knocking on the doors. In Albany, or in New York City, it's folks who are advocating for young men who have sex with men, and folks who, like Tracie, advocate a lot for young women. And I think there isn't a whole contingency of folks who are advocating for heterosexual men. I can't think of any, actually.
Tracie Gardner: There are not that many advocating for young women!
Claire Simon: I know. I know.
Jennifer Irwin: Those of us doing work on young women and sexual risk of HIV (mostly) and STDs partner more often with LGBT [lesbian, gay, bisexual and transgender]-focused groups. So it's easier to work with Gay Men of African Descent than it is working with Girls Inc. or the Deltas. The challenge of getting HIV "recognized" as issue of concern across the silos is difficult when orgs are not LGBT based.
Claire Simon: Right.
Tracie Gardner: Right. Exactly.
Jennifer Irwin: I think that's where the line is drawn. And I think it's a failing on all of our parts to not address this population. It just doesn't get addressed.
Tracie Gardner: Not to place all of the blame on AIDS, Inc., because there has been a failure of creativity and will on the part of folks who should be raising a ruckus with us to the policymakers. There's no reason why HEAT and the Boys Club can't work together in Albany around young people's health. There's no reason not to be working with local chapters of fraternities, in terms of the community work they're doing. There's no reason not to be working with some of the vocational programs that are working with young men, trying to get employment skills around their health.
We've got to get to them. AIDS needs to go to the places that are not AIDS, and say, "You've got to deal with AIDS." And how do we work together?
Kellee Terrell: I want to shift gears a bit. Earlier in the discussion, we were talking about how much societal value is placed on being in a relationship with a man and the pressure to hold on to him by any means necessary. I hear stories from older women going to family reunions where the first thing people ask is not, "What are all these great things you're doing at work?" It's, "Are you married?" "Do you have a man?" "When are you going to get a boyfriend?" "When are you going to have kids?"
Unfortunately your worth seems to be correlated to whether you have a man or a baby. How much of this attitude is trickling down to our young girls?"
Claire Simon: This attitude is definitely affecting young girls and women, because these attitudes are very prevalent in our society. I have personal issues with it because I do get those questions all the time. Regardless of how many master's degrees or Ph.D.s I have, how much money I make, or what I'm doing, it doesn't matter.
Tracie Gardner: Right. What we're handed down, in terms of the message, is that your worth is judged based on your ability to have and keep a male partner. It flies in the face of the statistics -- particularly in the African-American community, where we are struggling around the notion of a black man and a black woman being together. And especially with President Obama and Michelle's marriage being so broadcasted, there is a sense of obsession with ...
Kellee Terrell: Black love.
Tracie Gardner: Yes, black love. And even in the most twisted of ways, it's a symbol and it's a beacon that resonates for a lot of people. Therefore, we embrace it, because we are told it strengthens the community.
Kellee Terrell: And it's also pressure for black women to be the ones to make those efforts to keep that black love together.
Tracie Gardner: Exactly. But look at the statistics of there being a lack of quote-unquote viable black men. So many black men in parts of this country happen to have involvement with the criminal justice system on a regular basis. And we can talk about the reasons and whys of that. But the reality is that the prison and the prison policies of a particular jurisdiction tend to hew real closely to the HIV prevalence numbers in different parts of the country.
And so prison health, and community health -- I've talked about this a long time -- it creates an imbalance in communities, where the ratio of men to women is such that men naturally, so to speak, have an ability to choose from a greater number of women than women have to choose from a greater number of men. Because on average, the man is not in the community, and that encourages concurrent relationships. It encourages closed sexual networks in closed communities. The epidemic that's happening in certain parts of the South and certain parts of New York City is not unlike the epidemic that was popping up in the gay enclaves in the '80s, when HIV was first rearing its head.
Claire Simon: When we talk about the male-to-female ratios -- I don't even know how much it is now -- one man to every three women, four women, five, or whatever. But when we're thinking about that, we're not thinking that this goes back to this whole notion of, "Oh, well, at least he comes home at night. At least he gives me money. Oh, at least I have a man."
It goes back to the notion of what is fueling this epidemic. Because I may be with someone who I know is with other women. But because he calls me every Tuesday, and we have a date every Wednesday, or he comes over and leaves me some money then that's what I do.
How do we really begin to break that? How do we begin to have honest conversations in our communities around that? That could be very well what's putting us at risk. That is what's putting us at risk for infection.
This transcript has been edited for clarity.