Zayda Rivera: Good afternoon, my name is Zayda Rivera, and I'm a multicultural communications strategist for Lagrant Communications, working on behalf of the Robert Wood Johnson Foundation. I'm extremely happy to be here today as the moderator for this roundtable discussion regarding HIV/AIDS and Latinas called "What Does Gender Have to Do With It?" Today's discussion will coincide with TheBody.com's launch of the HIV/AIDS Resource Center for Latinos.
I'd like to begin by introducing our wonderful panelists today. First, Susan Rodriguez is the president and founding director of the Sisterhood Mobilized for AIDS/HIV Research and Treatment (SMART) University, based in New York City. Next, we have Bianca Lopez, who, for the past four years, has held the position of community coordinator for the Connect to Protect Bronx Coalition. And finally, Maria Mejia is a blogger for TheBody.com, as well as an activist, peer educator and caregiver based in Miami, Fla.
Welcome ladies, and thank you for joining the discussion today.
All Women: Thank you.
Zayda Rivera: Can you all briefly describe your work before getting into the discussions. Let's begin with Susan.
Susan Rodriguez: Hi, thank you so much for asking me to be part of this discussion. When you ask what does gender have to do with it, it has everything to do with it. As a woman living with HIV for almost 20 years, it has impacted my life and my work. At SMART, we provide treatment education and support for women living with or affected by HIV and AIDS, because we know that women need specific information. So that's what we've been doing for the past 13 years, is providing women in our community with the information that they need.
Zayda Rivera: Bianca?
Bianca Lopez: I am the community coordinator for the Connect to Protect Bronx Coalition, which is part of the Adolescent AIDS Program at Montefiore Medical Center in the Bronx. Our mission with the Connect to Protect Bronx Coalition is to reduce HIV/AIDS rates among African-American and Latina adolescents between the ages of 13-24 through collaborative efforts to impact community programs, policies and social practices. We strive to create what we call structural changes in the community, really focusing on the different causes of HIV and reducing young people's risk for contracting HIV.
Zayda Rivera: Maria?
Maria Mejia: I have been positive for 23 years. I was infected at the age of 16, and diagnosed when I was 18. Right now, my work mostly focuses on teenagers and young people. I go to the schools, educating them about prevention. I'm also a blogger for TheBody.com, and for The Well Project's blog "A Girl Like Me." I'm also very focused right now on using the Internet to do my activism, through Twitter, YouTube and Facebook. And I have been very successful at it.
I have also formed an international support group for people infected and affected all over the world on Facebook; it has 1,500 members. And I just recently created one for the Hispanic/Latin American community. I am also pretty much very involved in the LGBT [lesbian, gay, bisexual and transgender] community, because I am a lesbian who is positive; I'm trying to focus on that too, because there are not a lot of lesbians that are positive that are out there.
Zayda Rivera: Great, thank you ladies. So, let's get started. While the Latino community is extremely diverse, given what you have seen in your work, what are some of the major risk factors that Latinas encounter that make them more vulnerable to contracting HIV?
Susan Rodriguez: I would have to say being a woman is a major risk factor for Latinas. Being in a long-term relationship with a man, whether he's your husband or boyfriend, where you might be less likely to use a condom. Sixty-eight percent of the women who are diagnosed with HIV in SMART who are Latina have been infected while with a long-term partner.
Also, just being able to talk about sex and HIV is an issue -- it was not part of a conversation that I had with anybody, nor were what my risk factors would be as a woman. There are also language barriers and the fact that women are not getting the correct information, or can't discuss it with others.
Bianca Lopez: The work that I've done has been really focused on adolescents and one of the major issues that our coalition has been focusing on is the lack of comprehensive sex education. This has an impact on adolescents, especially vulnerable Latinas, who may not be as knowledgeable about HIV, STDs [sexually transmitted diseases] and safer sex practices. They also may not be likely to get this information in their homes. And that has been a real issue that we've been trying to tackle and, thankfully, the new chancellor of New York City Public Schools, Dennis Walcott, has just issued a mandate to teach comprehensive sex education in middle and high schools. So, hopefully, this will have an impact on the HIV risk among Latinas and African-American adolescents.
Maria Mejia: One of the major problems that I have encountered myself is stigma and self-stigma. I come from a very ultra-conservative Catholic family and one of the first things that my mother told me when I got diagnosed was that I should not tell anyone, any family members or friends. I realize that she was trying to protect me.
Recently, one lady from Colombia, my home country, told me that in her town there was a lady who was positive and the people in her town were planning to kill her, because they were afraid that they were all going to get infected. So yes, there is a lot of misinformation, a lot of stigma and a lot of fear, which can lead to people not wanting to get tested.
And then there's religion and the church. Our community is very much into God and the church and that tends to make us view this disease as a moral disease. People sometimes look at HIV as a curse from God. I've had the opportunity to speak in two churches, and try to at least teach them that this disease can happen to anyone. Through my work, I have seen HIV impact a baby to an 80-year-old woman.
And as far as teenagers go, I really do feel that they're not respecting this illness. I tell them it is not a death sentence anymore, you can see Magic Johnson, you can see me, but it is a life sentence.
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.
Zayda Rivera: I definitely think that, if the medical staff at your facility can't speak your language, that would just add to the strife of finding out that you're HIV positive.
Bianca Lopez: Exactly. And that happens, and you would think that it wouldn't happen in New York City. Believe me, it does happen.
Zayda Rivera: Maria, do you find this to be a problem in Miami?
Maria Mejia: No, here in Miami, mostly everyone in hospital settings is bilingual. I'm bilingual, too. There is a big Haitian community here, so a lot of people speak English, Spanish and Creole. What I have found is that Latin Americans are the ones who are having the most difficulty, because they don't really like to go to support groups or there are not that many support groups like in the countries where they live. So they are in hiding looking to the Internet.
This is why I just created this international place where people who are infected and affected can go for information in Spanish. So people who are bilingual can pass along information from the United States, and I translate it for them. Right now, this is a big thing for me. I make videos on YouTube and I always make my videos in Spanish and in English. And my viewers tell me, "Please, do more videos in Spanish. We want learn. We want to find out. Please don't forget about us."
Zayda Rivera: That's really great. Because of the cultural nuances that keep Latinos in hiding, the online component gives them the resources they need without really having to come out publicly.
Maria Mejia: What's really great is that they start making their own little support system. And those who don't want to do it in person can stay in their homes and still feel part of something. Some people are too sick, but this way they can still build relationships with others and get information. I've even seen people get married. People are finding love, even though they feel like they're never going to find love again, just because they're positive.
Zayda Rivera: Oh, wow.
Susan Rodriguez: One thing I want to say about the Internet: A lot of our women, when they first come to SMART, have never turned on a computer. And we know that there's so much information they can get online, so we started having basic computer classes. Even if you can't afford a computer, people know that you can use the computers at the library for free.
Zayda Rivera: Right.
Susan Rodriguez: But they are not really teaching you at the library how to use the computer, so these computer classes that teach basic computer literacy are so important to women. Once they know how to get online, they do research and get the information that they need in the language that they need it.
Bianca Lopez: Our young people are really avid computer users, so we have a Twitter account and a Facebook page. We have to change our ways as a staff. And by the way, I need to make a correction: A quarter of our staff is fully bilingual. We also have a lot of our outreach materials in both English and Spanish. The only thing is that most of our computer work ends up being in English. Hopefully, maybe we can make that change and also do some bilingual blogging and have information available in Spanish.
But, as I was saying, we also conduct research here at the Adolescent AIDS Program and have community groups and one way to reach either Latina or African-American girls that lived in the Bronx was to use the Internet to recruit them. We have a Facebook page just for one particular program; unfortunately, we lost funding for this program, but they still keep in contact with us. Some of us are still Facebook friends [laughs]. And that's so important, to have media like this -- it's what we're moving to.
This transcript has been edited for clarity.
Read Part 2 here.