September 20, 2011
At some point in life, 1 in 106 Latinas will be diagnosed with HIV in the U.S. In addition, while Latinas account for only 14 percent of the U.S. female population over the age of 13, they account for 18 percent of all HIV cases among women and account for 21 percent of cumulative AIDS cases among women. Not to mention, AIDS is the fifth leading cause of death for Latinas aged 25-44.
Numerous studies have found that the major mode of transmission in this population is heterosexual contact. But what else is contributing to these numbers?
In an exclusive, roundtable discussion, Zayda Rivera, journalist and multicultural communications strategist for the Robert Wood Johnson Foundation, sat down with Susan Rodriguez, co-founder, Sisterhood Mobilized for AIDS/HIV Research and Treatment (SMART) University; Bianca Lopez, community coordinator for the Adolescent AIDS Program; and Maria T. Mejia, activist and blogger for TheBody.com, to discuss HIV prevention obstacles, how gender inequality makes Latinas vulnerable to contracting HIV, and how language can serve as a barrier to treatment and information.
This is Part 2. Read Part 1 here.
Zayda Rivera, Multicultural Communications Strategist for Lagrant Communications/Robert Wood Johnson Foundation
Susan Rodriguez, Co-founder of Sisterhood Mobilized for AIDS/HIV Research and Treatment (SMART) University
Bianca Lopez, Community Coordinator for Adolescent AIDS Program at the Children's Hospital at Montifiore
Maria T. Mejia, Activist and Blogger for TheBody.com
Zayda Rivera: So, we left off talking about the importance of incorporating social media and the Internet as a means of reaching young people. And I do have to say I have teenage nephews and I know they wake up and tweet, "I just woke up!" So yes, teens are online all day. [Laughs.]
Bianca Lopez: You know it.
Susan Rodriguez: We have a youth program and the youth are the opposite of the women that are in our program. They are so computer savvy -- they know what to do. They do a lot of social networking. They all have Facebook pages and some of them even have PSAs [public service announcements] up on YouTube.
That's part of the projects that they do and they've actually taught some of our women how to post things on YouTube as well.
Zayda Rivera: Wow.
Susan Rodriguez: Yeah, it's really intergenerational and multidisciplinary. When I first started with the women of SMART, I never expected it to have all these different components. And everything has just evolved. Some of us have had kids who have grown up with the program and they're involved with it.
Our SMART youth program, their thing is to do the social networking -- Facebook, Twitter and this and that. I don't even get on it. [Laughs.] It's just, I'm not wired for it. [Laughs.]
Zayda Rivera: I want to talk about the high number of uninsured in the Latino community. If you find out that you're HIV positive, and you have no health insurance, what resources are available for you if you need medical attention to treat your HIV/AIDS?
Susan Rodriguez: They need to move to New York. [Laughs.]
Bianca Lopez: Yeah, I was thinking that.
Susan Rodriguez: New York City has the best medical everything.
Bianca Lopez: Yes.
Susan Rodriguez: ADAP [U.S. AIDS Drug Assistance Program] has been under fire with all of these cuts and waiting lists. New York ADAP is really good. That's what most people who are positive use -- my daughter had to get on ADAP and that's a place where people can go if they don't have insurance.
Bianca Lopez: Even if you're working?
Susan Rodriguez: Even if you're working, you can still get access to your medications -- that's the beauty of it. But New York City is like the gold standard.
We also have really good public hospitals here. When my husband and I were first diagnosed in '95, it was through a public hospital -- Metropolitan Hospital. And we were able to get medication through their pharmacy there. I am not sure if they still do that now, that was many years ago.
Zayda Rivera: Maria, how is it in Florida?
Maria Mejia: It is horrible. As an American citizen -- yeah, it's horrible. There are citizens who cannot get access to the medicines that they need. We talk to people about other states, like New York and Philadelphia, that have great ADAP programs, but a lot of positive people who live in Florida don't have the money to even move.
So yes, there's a really big crisis going on right now. It's really frustrating and sad. I have gone to the ADAP meetings and people have told me that the government should not be obligated to give people living with HIV/AIDS medication. I tell them, "You know what? Until it happens to you or your loved one, you will not understand. If you continue to do this, you're going to have blood on your hands, because this disease affects mothers and children."
I'm telling you, American citizens don't have the medication that they need while people in the developing world are getting their medication for free.
Susan Rodriguez: Exactly. [Laughs.]
Maria Mejia: But they just tell me that they are not obligated, because of unemployment and the economy and that's why ADAP needs to be cut. So basically, I'm very afraid for the people who become infected right now, because there is a waiting list; people are going to be without the medicines that they need to keep them alive.
But I also told them that when I started meds 11 years ago, it saved my life. Now, I have insurance, and I'm blessed because of that. Without it, I don't know what would have happened. These waiting lists are growing, and it's terrible. I hope that they find a way to get money.
We just have to rally and fight, like in the Larry Kramer times 30 years ago. We really need to be out more. I'm a fierce activist, but we just have to do more and show our faces more, because this is not right. This is happening to our people and our people are dying.
Susan Rodriguez: I see this like a form of punishment.
Maria Mejia: Absolutely.
Susan Rodriguez: Not only do they do it to people who are not able to get health care insurance, they also do it to people who are incarcerated and and released. We're going to take away your Medicaid, because you've been incarcerated, at a time when you probably need it most.
Maria Mejia: Right.
Susan Rodriguez: You have prisoners exiting the prison system, where maybe this is the first time that they are finding out that they are HIV positive, and then their Medicaid is taken away from them. It's just disgusting. I am so disgusted with our health care system -- this should not be happening.
Zayda Rivera: On one hand, it makes me feel good to hear that New York is in good standing, yet there are so many other states, such as Florida, that aren't getting the right attention and funding that they need to fight HIV/AIDS in their regions. And there are millions being spent for other countries and their epidemic. I do not want to come off as someone who doesn't care about other countries, because I do. But how can we put so much money into other countries, when there are people right in Florida that are without medication?
Maria Mejia: That's exactly what I told them. Of course we have to help others, I mean, we're all human beings, but we have to take care of home too.
Susan Rodriguez: Yes, we haven't aced it here at home, that's for sure. In my early years, I was involved with activism around global treatment, and somebody said to me, "Susan, not for nothing, I think you need to focus on your own backyard here. We have enough problems here."
That person had a great point: How can we really make an impact in other places, when we can't get care right here. We really have to get it right here first.
Maria Mejia: The other problem is with pharma. The problem with these pharmaceutical companies here is the patent laws. The U.S. is strict with these laws while in other countries, such as Brazil, they broke the laws and started making their own meds to make sure everyone has them for free.
Susan Rodriguez: I doubt it ever will happen here.
Bianca Lopez: I also want to jump in and mention that President Obama put out the National HIV/AIDS Strategy for the U.S. He is the first president in the 30 years of the AIDS epidemic that has put out a strategy for it. Part of that discussion is about access to medication, but it's important to note that the discussion should be more than just access to health insurance. What about the actual discussion? It's missing.
Maria Mejia: Of course.
Zayda Rivera: This discussion alone could be a whole hour. [Laughs.]
Susan Rodriguez: With the National HIV/AIDS Strategy, women aren't even included in it. There is a lot mentioned about MSM [men who have sex with men], but not so much on women. Why was gender overlooked in the strategy? This has to change, but in order for that to happen we need to advocate for women, period.
We need to be like, this is just not acceptable anymore. I think that's the meat of it. It's related to the question that you asked at the beginning: What does gender have to do with it? It has everything to do with it.
If we're going to get a grip on this epidemic that affects Latinas and African-American women, then we need to really start having a mobilization of women. And it's not to exclude men, because we need to include them. There are issues that affect women that men need to be a part of the dialogue for.
It's also time to get away from this, "We don't want to talk about sex" or "We don't want to talk about drugs." Well, you know what? No one's going to get any money if we don't talk about these things -- the things that fuel the epidemic.
Zayda Rivera: I want to bring this conversation full circle. What does gender have to do with it? Bianca, let's start with you. In your work with Latinas, do you feel like there's a difference between Latinas living with HIV/AIDS and other women from different races or ethnic groups? If so, what are those differences?
Bianca Lopez: Susan made the point earlier that there's no one cookie-cutter approach for any group. The way that we approach prevention interventions needs to be adapted to different groups. What works in one community won't necessarily work in another. What works with one ethnic group, won't work with another. Because everyone is individualized. Even the term Latina is such an encompassing term. I mean, you're talking about women who are of Puerto Rican descent, versus Cuban, versus Mexican, versus Colombian.
There are so many identities that are included under this one umbrella term. Even now, it's too much. So I think we need work on a community level, to approach individuals and meet them where they're at. Because everybody has a different identity. We also need to keep this in mind when advocating for policy as well.
Zayda Rivera: Those are really good points. Susan?
Susan Rodriguez: I can't speak to any one ethnic group, because I have so many different backgrounds. I don't even know half of them. But I think that, for Latinas, the only thing that kind of stands out for me is immigration and the lack of health insurance because of it. The issues of being undocumented and the language barriers. These are all issues specific to being a Latina. That may go for other people from other countries as well.
All Women: Exactly.
Zayda Rivera: Maria, do you want to add anything?
Maria Mejia: Sure. I agree with both ladies; they're completely correct. Everybody is an individual. But from what I've observed, the need for more education and the language barrier are serious issues that Latinas face. We need more up-to-date resources that tell our stories, in our languages, that can give people support. There needs to be more organizations that are linking people to this information.
Like everyone said, immigration and the right to health care are important. Immigration is a big factor here in Miami. But like I said before, we have to educate everybody -- the immigrants and the citizens -- to let them know that they should not be ashamed of being HIV positive. We have to teach them and let them know by our stories that they don't have to live in shame. So they can actually come out, and perhaps get out of their depression and be more proactive. But most importantly, we have to remind people that HIV is not a moral disease, it's a condition that affects human beings and it can happen to anybody.
Zayda Rivera: Wonderful. And with that, I am going to bring this roundtable to a close. Thank you ladies for participating.
This transcript has been edited for clarity.
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