September 15, 2011
"I got to see the 'dirty side' of AIDS in the '80s and '90s," remarks Rafael Abadia; "Younger people really haven't. I don't think they see the urgency." Rafael came close to death several times in those early years of the epidemic, and has taken numerous HIV treatment regimens. He's also been involved in advocacy ever since -- battling stigma rooted in homophobia as well as AIDSphobia, and fighting for access to care for others living with HIV. Nowadays, he's still tirelessly working to raise awareness of HIV in Latino communities in his home state of Florida. But he's been thinking it might soon be time for a rest -- so he's devising plans to get youth more involved in HIV advocacy. "I wish we had other younger advocates taking over," he laughs; "I am getting older!"
How did you find out you were HIV positive?
I was having flu-like symptoms, and I went to my general doctor at the time; he suggested I have an HIV test. A few days later he called me on the phone and gave me my diagnosis. He just came out with it. I don't remember what else he said. [chuckles] I was shocked.
I had a partner at the time. He was out of town on business, so I felt completely alone. I hate to use the term "a little suicidal," but those thoughts came into my mind. I was active in the community in New York City then -- I volunteered at Gay Men's Health Crisis (GMHC), so I had kinda seen the face of AIDS.
How did your partner take it when you disclosed to him?
He was going to be away for the weekend, and he just flew back the next day. It was fine for the next couple of months, but then we parted. He couldn't handle it.
How did you get support through those first few months of being positive?
Since I had volunteered for GMHC, I knew a couple people there. After my diagnosis, that following Monday, I was diagnosed with PCP [Pneumocystis pneumonia] and hospitalized. They kept me in the hospital for a month. From there, my partner called GMHC and they did the intake at the hospital, and I became a client of GMHC. They helped me get connected to medical care and so forth. I was very fortunate, because they guided me to some support services which I desperately needed.
How long did it take you to get used to fact that you had HIV?
It wasn't easy. At first my main focus was recovering from the PCP, which took a long time. GMHC connected me with great mental health care providers, and I started seeing a therapist. That really helped me deal with internal issues, because not only was I dealing with the AIDS diagnosis, my relationship was also breaking up. I needed to find a new place to live. So many things were happening.
Another concern was my parents. At the time they were living in Puerto Rico. I knew I couldn't tell them about my diagnosis over the phone. I knew I had to fly to Puerto Rico. I had to prepare myself mentally for that. That's what I did for the first eight or nine months: prepared myself.
I flew to Puerto Rico. I had lost a lot of weight, so I made sure to wear a lot of baggy clothes to try to cover my illness. I was really concerned about how my parents were going to take it. They're extremely religious, Christian fundamentalists. My being gay was an issue. I didn't know what to expect.
Then the day came, and I sat in my parent's living room; my mom was in the kitchen. I said "Dad, I need to speak to both of you. It's very serious." He called my mom, and my mom just kind of ignored him, she didn't want to come. They knew something was gonna be up. [laughs] When my mom came, the three of us sat in the living room, and I told them that I had AIDS.
My dad is what I call a true macho Puerto Rican man, whom I've never seen cry. He ran into his bedroom, crying -- really crying. I ran after him. I grabbed him and he put his head on my shoulder and we both cried.
To my amazement, they accepted me immediately. I thought they were going to put away the spoons, the cups, and not let me use them -- because I've heard horror stories from other people. But no, from day one, they accepted me, and they were there for me.
What would you advise others to do, when they're disclosing their status to their family or loved ones?
It's really individualized; I've met so many people in different situations. I've known of people with families that completely shunned them and don't speak to them anymore. So I'm very blessed to come from a very loving family. It's easy for me to tell everyone, because I have that support.
What I recommend someone do is to seek some professional help. See a therapist, a counselor, who can sit down and really guide you and prepare you for whatever happens. You need to be ready to expose yourself when you tell someone about your HIV status, because people react differently. I've even lost friends, people who I thought were my friends, but once they knew of my diagnosis they completely stopped talking to me -- even within the gay community, which was my biggest shock. It's sad, but it happens. People show their true colors.
In the Latino community as you understand it, in your opinion, which do you think has bigger stigma associated with it: being gay, or being HIV positive?
I think being gay carries the most stigma of the two. I live my life as an openly gay man. Both in New York where I used to live and here in Florida, where I live now, I meet other gay Latinos and they're completely in the closet, because they're afraid of what's going to happen with their jobs or things of that nature. It's hard for me to interact sometimes. If I want to date someone, the fact that I'm open scares some people away.
There's still so much stigma within the Latino community, especially around who's "gay" and who isn't. There are many men out there having sex with men who would never consider themselves gay. If they're the top, the one doing the penetration, to them, that doesn't take away their manhood, so they're not gay. "Gay" is the bottom -- being the one who receives. Then, if a man gives another man a blowjob, the one giving the blowjob is the gay guy, not the other one. There are so many justifications. But, again, they're having intimate sexual encounters, and then they're going back to their wives or girlfriends. It's unfortunate, but it's something that does happen.
I was born in New York, but I was raised in Puerto Rico. I've never been in the closet. [laughs] I've always been gay. I always knew. I've never had a sexual relationship with a woman. But, I remember some of the guys that I was with, even if we were kissing and being intimate, in their heads, they were still straight. It's very cultural. And there are differences within the Hispanic community, based on where people come from. I've seen some Central Americans and South Americans who have to refuse even the notion that they're gay, because otherwise they would not be accepted.
How do you think that feeds into the HIV pandemic and contributes to stigma?
That's where that macho mentality comes in. I remember when I was in college in Puerto Rico, men would brag about how many sexual encounters they'd had with all these women. That would make them big macho: to have as many partners as they liked.
Years ago, when I used to go to the gay bars in Puerto Rico, a lot of married men would go there. One excuse I used to hear was that other guys would do things that their wives or girlfriends wouldn't do. I think it's only an excuse. I don't buy that. They just want to explore their feelings or whatever.
How have you personally dealt with the stigma associated with being HIV positive? Do you have any interesting stories?
I'm very up front about it, because I do believe, not only with HIV but also with being gay, in order for people to break that stigma, we need to be out there. So many times people have told me, "You're not like other gay people"; or, "I thought people with AIDS were like this or that"; or, "You don't look sick." That's chipping into that stigma, and I think we really need to do that.
My neighbors here say, "For a gay guy, you're a cool guy." [laughs] And they think that's a compliment! For them it is a compliment. But I say, "Well, you know, what do you expect?"
I have a friend I met here. He calls himself a "redneck." He and I have breakfast every once in a while. He's a straight guy. He loves women and brags about it. Because of the work that I volunteer for, I get him free condoms, and lubes, and all that information. [laughs] He jokes and says, "You know, I never had a fag friend before." I've just learned to tighten my lips a little and not say too much. But believe it or not, it's breaking the stigma that he had about gay men. He says, "Yeah, for a gay man, you're a cool guy"; I say, "For a redneck, so are you." [laughs]
Regarding your HIV status: What do you think has given you the strength to come out about it?
Good question! [laughs] The first couple of years were very difficult. This was before protease inhibitors really came out. I remember going to support groups and therapists, preparing to die. Therapy back then was preparation for getting sick and then dying.
I had three or four very close calls. I had CMV [cytomegalovirus] retinitis in my right eye. I lost the vision out of one eye. I had kidney problems, liver problems. I would joke that I kept "waking up." I remember, there was a Star Trek movie that was being made, and I remember joking and saying, "I wanna live to at least see that movie!" Then the Star Wars movies started, and I said, "You know something? I'm making projections into the future! If I'm gonna do that, then let me just live my life openly, and show people that getting a diagnosis is hard in the beginning, but you just strap on your boots." It's a new journey.
I'm not very religious, but I like to think I'm very spiritual. I believe things are given to us to work with. I love what I do, advocating for services for people living with HIV/AIDS -- people who are too afraid or too timid to advocate for themselves. I get joy out of that. So it's what you make of it.
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! Sí!" 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.
Which HIV med regimen are you taking now?
I take Norvir (ritonavir), Reyataz (atazanavir) and Truvada (tenofovir/FTC). Once in a while I get some diarrhea, but it's the easiest regimen I've ever had. I take it once a day. On some regimens, I had to carry medications with me all the time. I'm very satisfied with this regimen. I've been on it since before I moved here and it's been five years now, so six or seven years on the same regimen, and I've never missed one dosage.
How do you remember to take your medications?
I change methods from time to time. I have my big pill organizer for the week, so I just put my meds and my vitamins in there once a week and it's easy. But sometimes I get bored of that, or I just get tired of seeing all the pills together, so I go back to just taking them out of the bottle. I'm pretty good at it. I don't really have an issue.
If I ever get into a pity party, feeling sorry for myself and going, "Oh, I have to take these meds," the first thing I think is of those people who can't take them. I think of the people on the ADAP [AIDS Drug Assistance Program] waiting list who have no access to medications or are struggling to get medications. It's like a slap in my face to wake up and just take my medications. That's how I deal with those days when I don't want to take my medications.
Florida has the highest rate of people on ADAP waiting lists. A lot of agencies are happy because we have PAPs -- patient assistance programs -- but because I deal with so many consumers, I know that sometimes the medications are either sent to their case manager's, to their doctor's office, or to their homes. Sometimes they'll get two medications and one is delayed, so they're taking those two medications alone until they get the third one, which is not good. So people like to praise the PAPs, but I'm very concerned about that because some people have fallen out of the system.
Another concern is that some people who are on ADAP and miss their appointments are kicked out of ADAP. These are already the "hard clients" -- they used to only have to go to one place to pick up their medications and now you have them going to two or three different sources to get their medications. If they had trouble getting their medications at one location, it's gonna be more of a problem at several locations. That's what I've been fighting down here for.
How do you find the energy to do this kind of work while managing your own health? Does it ever feel like it's "all HIV, all the time"?
I have to be honest: Sometimes I get exhausted with the involvement. People tend to be very timid down here about advocacy, specifically consumers. I'd wanted to slow down a little this year but I convinced myself that, because of health care reform, we need people in place that really know the system, that know Ryan White well, to prepare ourselves. There are so many changes occurring, so I'm going to give it an extra five years and reevaluate my involvement. I'll always be involved, one way or another, but right now I'm very committed. I do get tired from time to time. I wish we had other younger advocates taking over -- I am getting older! [laughs]
What do you think keeps younger advocates from stepping up?
I got to see the "dirty side" of AIDs in the '80s and '90s; younger people really haven't. I don't think they see the urgency. It's very sad too because we're getting a lot of new cases of HIV among youth.
Here in Palm Beach we're planning a basic 101 HIV advocacy training for youth. So hopefully we'll get some new advocates into play.
It's funny: My mom works with a ministry that goes to the Dominican Republic to take food, medications and so forth. She always wanted me to become a minister of some sort. I always joke with her and say, "Mom, this is my ministry." We all have a calling, so it's worked for me.
What role do church and religion play in your life?
An important one to some extent. You hear people say HIV/AIDS is a punishment from God. Believe me, I've heard everything. I like to believe I have my own relationship with what I call my higher power. And it's a good one. No religion, no one person, no matter what they say, or how they interpret things, could ruin the relationship I have with my higher power. Sometimes I like to say, "She is fabulous." [laughs]
Is there anything else you want to share with our readers?
We started Florida HIV/AIDS Advocacy Network -- it's an advocacy group for providers, government officials, consumers like myself, and we're doing advocacy on a state level. I'm also active in the ADAP Advocacy Association (aaa+). I go to all their conferences. Like I mentioned earlier, I wish we had more people in this fight -- more young people and women coming into play to do more advocacy.
If you're fortunate enough, as I am, to be out there advocating and being open about your HIV status, and it doesn't harm you in anyway, please do it. It makes people aware of HIV. It shows people that we come in all forms, all shapes, all sizes, all colors. It's something we all have to work together on. So, if you're able, please, speak up.
Thank you so much.
This interview originally took place in June 2008, and has been revised, updated and edited for clarity. Additional reporting was provided by Olivia Ford, the community manager for TheBody.com and TheBodyPRO.com.