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HIV/AIDS and Latinas: What Does Gender Have to Do With It? Part 1

September 15, 2011

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Zayda Rivera: You would think, after so many years, stigma wouldn't still exist to that magnitude.

Susan Rodriguez: I definitely find it in my work. When women come through our doors, whether they're Latina, African American, white or whatever, they come at a very vulnerable time. They're shattered; their lives have been shattered. And you know, it's the stigma and isolation that haven't really been addressed.

I know what I went through. I just couldn't talk to anybody, not even a mental health professional, because it felt like every bad thing that ever happened to me my entire life was now hitting me full-force. So I can relate. When these women come through our doors, they are bringing their baggage. We don't ask them to leave it at the door.

And they don't want to be open about their lives and what's going on. I have women who have been with me for the past 13 years, and they still haven't told their family or friends. Women like Maria and I are the voices of women. We don't speak for just ourselves -- we are speaking for them too.


Zayda Rivera: Bianca?

Bianca Lopez: We've been trying to address stigma, as a community effort, especially among adolescents. Without education, can you imagine how pervasive the stigma of HIV is in our communities? I'm not just talking in the Bronx; I'm talking in the city; I'm talking nationally. I definitely agree with Susan and Maria that there hasn't been a reduction in stigma. Educating communities about HIV can't just be about the youth -- it has to include their parents and other family members. The Adolescent AIDS Program is actually one of the first adolescent-focused HIV programs in the country. Our patients have real difficulties with disclosure, not only with their partners, but also with their families.

Our clinic helps provide routine testing in the community. There was this large campaign for HIV testing in the Bronx. The goal was to have all the residents in the Bronx know their status. So people can get tested as a prevention measure. But there's also the issue of what happens to people who are stigmatized in their own neighborhoods, or in their own families, when they find out their status.

Zayda Rivera: When dealing with stigma, is there a difference in how you address these issues with adults and young people?

Susan Rodriguez: I don't think there's a one size fits all approach; every woman that comes through our door needs a different approach. So for some, we use art projects, such as body mapping, and the women find them very cathartic. And if our women become more comfortable with themselves, maybe they can be an advocate for themselves and love themselves.

And then, maybe, at some point, they can go into the community and do outreach, giving testimonies and talk about their lives and experiences.

Zayda Rivera: Maria, after diagnosis, what do you feel is the first step that a Latina should take to ensure she leads a healthy life living with HIV?

Maria Mejia: The first step is to do your research; read a lot about the illness, which is what I did, even back when there was not even the Internet really. Secondly, get a good case manager and get a good doctor. A lot of people that I speak with have problems with their HIV specialist. They feel like they're trapped with them. I tell them, "No, the relationship you have with your doctor is like a marriage. You're probably going to be seeing that doctor for a long time, so you have to be very comfortable with the doctor that you're seeing." It's important to make sure that your doctor listens to you.

When it comes to your medicine, make sure you research it. We have to be very proactive with our illness; that's one of the most important things.

Susan Rodriguez: Just adding to what Maria said, the first step is getting linked to care and finding support. When I was diagnosed, I didn't go to any support groups and my doc -- God bless him -- he was like my support network for many months. When I was ready to be with other women in a support group setting, it was mostly to get information.

So, Maria is absolutely right. It is important to get as much information about this disease and about the treatments as you can. When I was diagnosed, there was very little. Back then, women weren't even allowed to be in a lot of the clinical trials. So there was really very little data with women.

At SMART, we work with providers. We are a bridge between providers and their patients, because we're a safe and supportive place that provides the correct information that these women need. Also, we have health care providers, advocates and activists come in to teach these classes about a range of topics and the women ask a lot of questions. Some women are referred to us through their provider so that it's ensured that they get the right information and feel empowered to take care of themselves, keep their doctor's appointments, and know what tests to take and how to read their labs. It's a very complicated issue, and what we try to do is break it down and make it understandable.

Zayda Rivera: Maria, you mentioned something that is really important when you talked about the importance of researching your prescribed medication. I don't think a lot of people do that.

Maria Mejia: You have to research, because a lot of people in the Hispanic community, at least for myself, are into a lot of herbs and supplements, and sometimes these supplements and herbs interact with our HIV medication. So we have to research, but not be afraid to take our meds. There are a lot of people in our community who are very afraid to take their HIV medication. There is this dissident movement that keeps saying the medication actually will kill you faster. And I try to explain to people that what they're hearing are rumors from years ago, when they were giving high dosages of AZT [Retrovir, zidovudine]. That is not the time that we are living in now, but there is still a lot of misinformation out there.

I also tell them that the medications that are available now have fewer side effects. Don't get me wrong, they are still harsh, but things are different now. And I make sure they know that they shouldn't wait to start treatment. I waited 10 years to start treatment, because I was a teenager and was afraid. In my mind, I felt healthy, that is until my immune system broke down and I had 39 CD4s. I could have died. And most importantly, I tell people that, if your meds don't work for you, that doesn't mean all of the meds won't work -- there are a lot of options out there.

Susan Rodriguez: In addition to the medication, what's really, really important is nutrition and eating well. At SMART, we also have hands on cooking and nutrition classes that are taught from people of different cultures and ethnicities. We make sure that we use products that our people are familiar with. Most importantly, we show them how to make their food healthier and teach them the importance of safe food preparation.

It's not too much of a big lifestyle change in terms of cooking, but we do show the women how to cook healthier. We have women from Africa, from the Caribbean, and from all different Latino communities, and we try to infuse the ingredients that they're used to. We've taken our women to farmers' markets and food markets like Fairway and helped them read the food labels.

This is all really, really important for people living with HIV. As is working out and staying active.

Zayda Rivera: Great advice, too. I want to shift gears and go back to talking about some of the disparities and the language barriers that Latinas have to deal with. Bianca, how does your work tackle health disparities and/or language barriers?

Bianca Lopez: Most of my work is really focused on tackling the health disparities with respect to diagnosing HIV, especially in Latina and African-American young women in the Bronx. In terms of tackling language barriers, the core component is for organizations to have a culturally appropriate, culturally sensitive medical staff. In our Adolescent AIDS Program -- and I might not be 100 percent accurate -- but almost half of our staff is bilingual. I'm bilingual, and trained to be an HIV tester and HIV test counselor. And everyone, with the exception of the secretaries on our staff, is also trained to be HIV test counselors. So I think that that's really great, because our staff reflects the Bronx community and that diversity is helpful.

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This article was provided by TheBody.
See Also
HIV & Me: A Guide to Living With HIV for Hispanics
The Body en Español
More on HIV/AIDS in the U.S. Latino Community

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