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The Rising HIV Rates Among Young Women and Girls of Color: What's Going On? Part Two

By Kellee Terrell

February 10, 2011

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.

This is part two of the discussion; you can read part one here.

Kellee Terrell: We left off talking about the cultural influences and pressures that many young women of color face as they strive to obtain and keep a man in their life. Too many times a woman's worth appears to be measured in her ability to have a boyfriend or husband. Although by no means do I want to downplay how poverty, socioeconomic disadvantage and social networks play a factor in her HIV risk as well.

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All four of us live in New York City and are quite familiar with the surveillance map of AIDS diagnoses and HIV infections within all five boroughs. When we look at which neighborhoods are the most saturated with HIV, we also can see that those are the areas that are the most impoverished: South Bronx, parts of Brooklyn, Harlem, the Lower East Side and parts of Staten Island. The same can be said on a national level: New Orleans/Baton Rouge, Miami, Washington, D.C., Chicago, Jacksonville, et cetera.

But unfortunately, what happens is that when these numbers get released, just like when the CDC [U.S. Centers for Disease Control and Prevention] released its study about how 50 percent of black teens had an STD [sexually transmitted disease], the media doesn't do the best job explaining the circumstances behind why these numbers are this way. Then people walk away thinking, "Damn, black and Latino people are really out there, really promiscuous." And given how this stereotype has unfairly followed us for centuries, this is particularly bothersome and aggravating.

What doesn't get talked about enough is how women of color report fewer risk factors than their white counterparts, yet bear the brunt of the disease. So a lot is at play here.

Tracie Gardner

Tracie Gardner, Founder and Coordinator of the Women's Initiative to Stop HIV/AIDS NY at the Legal Action Center

Tracie, how much do social networks -- and I don't mean Facebook or Twitter [laughs], but clusters of areas that are highly saturated with HIV, usually poor and have higher rates of incarceration, IV [intravenous] drug use and sex work in which people are finding mates -- influence the rates of HIV?

Tracie Gardner: Well, first, poverty is key. Just look at the biggest blockbuster revelation that came out of the International AIDS Conference in Vienna [says sarcastically]. The Centers for Disease Control and Prevention released findings from a study they conducted that found that, dunh-dunh-dunh: HIV is highly correlated with poverty.

But here's the subtext: They even factored in gender and race. So, poverty -- in parts of the country where there's endemic poverty, poor infrastructure, poor state financing for infrastructure, like STD clinics and health care facilities that you can get to without traveling for two days. That, plus other economies, supporting people's ways of life, primarily around illegal drugs like crystal meth, etc.

The point is that the poverty, and what people do when they have fewer choices, and that they're landlocked by their poverty, is also what creates such a rich, fertile ground for that kind of networking, that sexual networking that fosters HIV and STD infections. You know what I mean?

Kellee Terrell: Jennifer, what are your thoughts?

Jennifer Irwin

Jennifer Irwin, Deputy Executive Director at Health and Education Alternatives for Teens

Jennifer Irwin: Tracie's spot on about this. I think the girls that we see, a lot of them have lived in the neighborhoods that they have lived in their whole lives. They don't venture far from their neighborhood. I mean, they may go to the store, or they may come to an appointment. Once in a while, they'll venture to a club, or something else. But really, their social relationships are often in the neighborhood that they live in. And the boys that they've been fooling around with off and on for years, whether they're with them or not, are these same boys that are going in and out of jail, coming back into the neighborhood. That is extremely common: the closed, kind of locked in -- like Tracie said, the landlocked way in which a lot of our young women socialize.

Going back to your comments about these false perceptions of promiscuity, one thing that we see a lot of with our young women is that, when you talk about the other issues that are going on, it's not necessarily about promiscuity. It's so many other things. A large portion of the girls that we see have dropped out of school. Some may have a GED [General Educational Development; the GED is a national high school equivalency exam for those who have not earned a high school diploma]. Many don't have one. And it ties right into self-value and self-worth and, also, their feeling of lack of choice. I think a lot of these young women are smart enough to know that their choices are limited, which is why certain decisions that they make are based on: "OK, my choices are limited. What's the best choice for me to get what I need?" And it may be the best choice for them at the time, even if it's not the healthiest choice, or the best choice for their life. But it works for them at that time to get what they need.

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Also, I think it comes down to a lot of other issues as well. A lot of our young women have been in and out of the foster care system, and so they have an entire life and history of being in and out of multiple homes. Not to mention, many of them have had a lot of sexual trauma in these foster care homes. And then when they turn 18, a lot of them transitioned out of foster care and have absolutely nothing. I think that's a big piece. The whole misconception that transitioning out of foster care is a great thing, when in reality some of these young women have never been taught life skills. So they leave foster care settings with no ability to be able to function very well on their own.

This is all happening at the same time that they're getting pregnant, or wanting to have babies. And so that's another added element to it.

A lot of our young women are also unstably housed. And so in an effort to have a roof over their head, or in an effort to have somewhere to sleep, they're making certain choices or decisions that work for them in the moment so that they all can get a good night's sleep somewhere. And it goes back to that point about limited choices.

Also, I think a lot of our women -- it's not just the men -- a lot of our young girls have been in and out of the juvenile justice system. I know a big focus is on the men in the community coming in and out of the juvenile justice system, and maybe the types of crimes men commit are a little different than the crimes that young women commit. But a lot of our young girls have some experience with the juvenile justice system at one point or another in their lives.

Now, put all of these issues together: poverty, sexual abuse and trauma, foster care, juvenile justice system, lack of education and limited choices. You almost have this overwhelming feeling of doom as you're thinking about it. The cards are stacked so high up against these young women in some of these neighborhoods. Go down the checklist of social issues, and these girls can check nine out of 10 of the things that they're dealing with on that. Their circumstances set them up so much for making decisions, or for being in situations that are putting them at risk, whether they are aware of it or not, or whether they're feeling empowered about it or not, or making a conscious decision about it or not.

But they don't have the support system. They don't have the safety net or the fallback that a lot of other young women have. And so I think, when you add all that up together, sometimes it's not so much like "Why do they have HIV?" It's almost like, "How could they not have HIV?"

Kellee Terrell: That's a really profound point: HIV really does prey on the vulnerable.

I think that researchers and a lot of HIV folks are trying to solve this problem with the clinical approach: Well, if we just throw microbicides at people, if we can get that going, this will work. Or if we can pass out female condoms, maybe that will work, maybe that will empower them. You can't necessarily empower disenfranchised people with items, even if these items were created to protect and keep people safe. That's not going to change their situation.

What is going to change their situation is dealing with the social oppression they're facing that's putting them in a situation that makes them vulnerable to HIV. It's simple: Better the lives of women and girls, and you better the lives of the entire community. It still frustrates me that this disconnect still exists, even 30 years into the epidemic.

Tracie Gardner: Right. This approach works internationally.

Claire Simon

Claire Simon, Co-Director of the Young Women of Color HIV/AIDS Coalition

Claire Simon: Right. It's working internationally. But domestically, we haven't gotten that message.

Tracie Gardner: We see ourselves as somehow above that, but it's the same fundamental issue. When the women and the girls in the community are healthy and taken care of, and generally self-sufficient -- meaning educated, can control their reproductive destiny and all of that good stuff -- the whole community benefits.

Claire Simon: Exactly. And I think when people look at developing countries, there is more of a sense of urgency to help. But in terms of micro-enterprise opportunities, it's not done here, because America is seen as the land of opportunity. Americans can go to school for free. What's the issue? You can access services. There are services up the wazoo. So what's the issue?

Kellee Terrell: Our culture is very judgmental when it comes to poverty. If you're an American and you're poor, it's your fault. Because people believe that the "American Dream" is so attainable. And for some it is, but for so many, it is not.

Jennifer Irwin: When we see HIV now in 2011 and beyond, we're going to know that we're not addressing these structural deficiencies well. Because, as you said, Kellee, it seeks out vulnerabilities. It shows you when systems aren't working, because when you think about it, we're talking about new infections and how to prevent them.

We haven't really talked extensively about the things that are happening that are good. New York enjoys a complete advantage over a lot of different places around the country, in terms of the treatment that has not only been pioneered here, but that's available. We have almost no pediatric HIV cases because of the intervention that can happen to reduce transmission between mother and child. We have adolescent, young-adult, HIV-positive folks having their own uninfected children.

There has been a whole health care system in New York and other places that has been built on the funding that AIDS has created the necessity for, and yet -- and still -- we are 15 years behind in prevention. We can deal with the sick and tertiary care; we don't do preventative care. Not just in HIV; overall, we don't do it. We don't do it well.

Kellee Terrell: Not to harp on the damning news, but I do want to talk about what people are doing around young women and girls that is working. Jennifer, what are some of the things that HEAT is doing that you feel have a positive impact in prevention?

Jennifer Irwin: A big thing that works was what Claire mentioned earlier [in part one of the roundtable]: peer-to-peer model programs. I think they work really, really well. When young people are given education, knowledge and the ability to talk to their peers, that makes a big difference.

A lot of our prevention and outreach work is done by staff who are peers of the women that they're reaching out to, in terms of the same age range, and we've also empowered a lot of our HIV-positive youth to help us in reaching out to other youths. I think it's very powerful when you have young people reaching out to young people, particularly when you're dealing with HIV-positive young women, who sometimes don't fall into any camp. I mean, they always get left out of the prevention camp, and they always get left out of the prevention programs. They sort of are a little bit in no man's land in terms of who is looking out for them, or who is providing services for them, other than a care program.

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I think what's really powerful is one of our programs called the Power Program. In this program, we have HIV-positive peers reaching out to young women who are at risk of falling out of care, or who have fallen out of care, or who are not being compliant with their medication or their treatment. The peer educators go out and talk to the women, meeting them where they are at.

I think that's a big piece of it that's really successful: going out and meeting these young women where they're at. If they're not in care, or they've fallen out of care, or they're not taking their health seriously enough to worry about it, then there are reasons behind it. And so a lot of what our positive peers do is they go to the young women's homes, meet them for coffee, call them on the phone, text them and communicate with them on Facebook and MySpace.

With this program they have camaraderie and a great support system. The peer leaders tell them, "Listen. I've been there. This has happened to me. I've been depressed like you. I've been this. I've been that. But, here, listen: This is really what I think would help you. Or let me help support you. Or let me escort you back to the clinic," and things like that.

I think that's one thing that works really, really well: young women reaching out to other young women. That's one thing that the Coalition does a great job at, is really empowering young women. I think that's a very successful model. Right Claire?

Claire Simon: Definitely, I think that's a very important component. I think the other component, which is what the Coalition has also focused on, is engaging providers who work with youth. Because, as a person who works in that literacy program, housing program, or whatever, I then have the resources so when a young person comes to me, I feel empowered. I feel like I have the information. I think that is also really key.

It also breaks this whole idea of "silos": We're not the only ones at the table anymore, talking about this issue. We have a host of other folks who care about young people, who work with young people, having these same conversations in the room, addressing these issues -- such as the role of media, homelessness, teen pregnancy, STD rates and juvenile justice. We're able to have these full-fledged conversations; there's no longer this elephant in the room that just sits there. And that has also been key.

I think there's still some way to go in terms of how we really build these partnerships to influence funding, and influence how this work is being done, by talking about social networking, social factors, and social structures. But those are two of the most important things: get young women at the table, let them share the message, let them talk about it in ways that are real for them; and also, engage their allies who are adults. Because that also gives them another support system, so when somebody does say something, they know that they have an adult who can vouch for them, who can talk to them, and who can validate what their experience is.

Jennifer Irwin: If I can add one thing, in terms of the HIV-positive women that are part of our program: I think what's very empowering for them is our whole model of care. Our model of care really puts the power of decision-making in the youth's hands, in terms of whether they take their medicines, whether they decide to have babies, whether they stay with partners, whether they don't stay with partners. And I think a big piece of that is really the lack of judgment -- like Kellee mentioned earlier, we're a culture of judgment, in many ways.

It's crucial to pull that whole judgment piece out of the care that you're giving. No matter if in your mind you're thinking, "Oh, my God; it is so crazy that she's doing this. She's hurting herself."

If they want to have a baby, we talk to them about how they do it safely. We don't sit there and say, "Don't have a kid. You don't need a kid. Oh, my God. Why would you ever want a kid?" So I think for some of these women, it's the first time in many of their lives that they are making independent decisions about their lives in a protected and supportive way. And I think that works very well for a lot of the young women who are in care with us.

Kellee Terrell: Well, ladies, I think our time is just about up. This was an amazing conversation, and hopefully, one of many conversations we're going to be having at TheBody.com about the interconnections of gender oppression and HIV, and the epidemic among women in this country.

Thank you for taking the time out of your busy schedules to speak with me.

This transcript has been edited for clarity.

Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.




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