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This Positive Life: An Interview With Rafael Abadia

September 15, 2011

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Have you found love since you tested positive?

Yes, several times. [laughs] And I'm still looking. Now that been getting more involved with my church, the Metropolitan Community Churches (MCC), I've been meeting people through the church. That's nice. The bars and the clubs are not really my thing. So I've been meeting some people. I'm not involved with anyone, but I'm still very hopeful!

I think what happens in my case is that, because I'm so open to the community about my HIV status, people assume that anyone that's with me is HIV positive. That scares some guys away, whether they're positive or not. But I'm not going to change the way I am! [laughs]

How has HIV changed you?


It's made me more outspoken and determined. I'm very demanding of my medical care. [laughs] I tell people to do the same. I tell people, if you're not satisfied, fire your doctor. Get another one. My experience with the first doctor, who did the HIV testing, really brought that out in me. That's why, when I see something that's not working correctly, I try to speak up. The way I look at it, every time I see something and I say something, I may be helping five or six people behind me that are afraid to speak up. And again, that fear is very prevalent among Hispanic communities.

I had an experience at a clinic here: They were having a lunch-and-learn program for Hispanics, and one of the case managers was talking to Spanish speakers in English. She would ask them, "Do you understand?" And they would say, "Yes! !" And I pulled her aside, and I said, "You know, they're saying yes to be polite. They really don't understand what you're saying."

She looked at me and said, "For real?" She didn't know. Many Hispanics, in situations like that, they'll say yes to anything you tell them -- especially because of immigration issues. So we need to be a little more sensitive about that.

What do you think are the biggest HIV-related issues that need fixing specifically in Hispanic communities nowadays?

There's a project I'm working on with the HIV Planning Council. We're preparing a training on immigration issues and HIV along with Legal Aid Society of Palm Beach County. Three lawyers who deal with these issues will be part of it. The problem I see in Palm Beach, and in Florida, is that when you look at the numbers, the HIV rate in Hispanics is not as high as I believe it is. One of the reasons is that a lot of people, whether they're here legally or illegally, are afraid to get tested because they're afraid of the repercussions from immigration. I see that a lot. We have farmland here so there are a lot of migrant workers. There's a huge rate of syphilis and gonorrhea in that population so we know that their exposure to HIV is there. So how can we convince them to get tested and not be scared?

That's one of the reasons I'm preparing this training: to make sure that key people in the community -- case managers, prevention people that go out and do the testing, key people from churches, farmers union, things like that -- are up to date on the issues of HIV and immigration, because there's a lot of confusion. To be honest, I don't know how immigration and HIV work. Immigration is a hot topic now; we need to make sure the information we give to consumers, or to people who want to get tested, is correct so that we don't jeopardize their wellbeing in this country. There are a lot of issues among Hispanics and that's one of my big concerns.

When I was on the HIV Planning Council in New York, I co-chaired the consumer committee. I didn't want to identify myself as only doing things for Latinos, because we had a variety of people and I really wanted to be fair to everyone. So I helped pioneer work for women, for youth, for you name it. But down here there's such a lack of Latinos in leadership positions that now, I'm completely Latino! [laughs] When I joined the planning council down here, I was the only Latino. Now there are three of four out of about a 31-to-35-person group.

How has your relationship with your family changed since you were diagnosed?

It's completely changed. We've become extremely close. I speak to my parents several times a day. Part of why I moved to Florida is that my parents live in Florida now. So does my older brother. I wanted to be closer to them.

What kinds of volunteer work do you do?

In addition to the HIV Planning Council of Palm Beach, I'm in the consumer advisory group for the Health Department's Bureau on HIV/AIDS. I've also been working closely with my church, MCC, to expand their HIV work. In November, MCC of the Palm Beaches is celebrating its 30-year anniversary, and we're going to commemorate that alongside 30 years of HIV/AIDS. I'm on disability so I don't have a paying job, but everything I do keeps me very busy.

Do you have a particular health regimen that helps you stay well?

I take medications, and I had a great nutritionist in New York. I take a lot of vitamins and some herbs. I drink as much water as possible. I'm on and off with exercise, though I'm better than I used to be. I've changed some of my eating habits to make sure I eat healthier foods.

I had lipodystrophy in my stomach area so I've been taking the new injectable drug just out this year, Egrifta (tesamorelin). I've lost some of the belly but they say it can take several months to really notice the difference and I'm only in my second month of taking it. I did a lot of research online about it, and I presented my doctor with all the information. She did her research and the next time I visited her -- she sees me every three months -- we discussed it. I had to go through some hoops at the beginning because the insurance company denied me coverage for it, so I had to appeal that. They ended up approving it for two years. So that's a good thing.

I've gone through so many treatments, from AZT (Retrovir, zidovudine) on. Like I said before, I almost died several times. I call myself a "child of Crixivan" because, when the trials for Crixivan (indinavir) started, I was able to get on them.

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This article was provided by TheBody.
See Also
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