August 1, 2013
In terms of raw numbers, the HIV epidemic among Native Americans may not seem as dire as it is among African Americans and other ethnic groups. However, Native Americans are the group with the third-highest rate of new HIV diagnoses in the U.S.; and compared with other races/ethnicities, Native Americans have poorer survival rates after diagnosis and face special HIV prevention challenges, including poverty and culturally based stigma.
People like Tyrone Lopez, of the Tohono O'odham nation, work in their own communities in hopes of reversing these trends. After a relationship with an IV drug user, Tyrone became HIV positive and started becoming a voice for all people living with HIV -- gay, straight, man, woman and otherwise -- in his nation. He announced his status and sexuality over the radio, he does education and prevention work among incarcerated Native Americans, and now that he also drives the van that shuttles his clients to doctor's appointments and other services, he doesn't sleep in late anymore, either.
Can you start by describing how you found out you were HIV positive?
I ended up with an opportunistic infection. I ended up with PCP (Pneumocystis pneumonia). I was in the hospital for about three weeks. They were running all kinds of tests; they weren't too sure. Then they finally asked if they could run an HIV test. After that, I said OK.
They kept me in isolation for those three weeks, actually. So it was a little bit hard. I was pretty weak, and stuff like that. But my aunt and my cousin came -- my mom just ran into them. And the doctor came in and said, "While we're going to do that, there's a chance that ... you know how things are. They may not go well."
So my aunt and my cousin -- well, my sister -- wanted to stay. I call her my sister, not my cousin. But they wanted to stay. And I said, "No." I said, "Go home. Remember what time I'm supposed to have this, and just take some time and do a little prayer for me. And that's it."
But at the time they didn't know. I had my legs out, and my sister had said, "God, your legs are so skinny." So I covered them up, because I was a little bit embarrassed when she said that. And so after that I hadn't really told them, but I figured they knew what I had.
What year was this?
This was in 2003.
OK. So, now, just so I can get clear on the timing and everything: You had PCP?
You had already had it for three weeks before, and been in the hospital before they did an HIV test?
Well, they were running everything when I first went in. They thought it was TB. They thought it was maybe some type of pneumonia or fungal infection, whatever. And then they asked if I could do the HIV test, and I said, "Sure." I said, "Just as long as I can get better; that's no problem."
But I was sick first, and I ended up in the hospital. They sent me back home with some medication. But the following day, I still wasn't feeling good. My parents had taken off for a party, so I had talked to my next-door neighbor. (He was getting ready for his date. I kind of felt bad for that.) I said, "I need to go to the hospital, and I need to go now."
At the time that you tested positive in 2003, did you realize that you were at risk for HIV?
Yes, I did, just because of who I was dating at the time. Number one, they were an IV drug user. And, granted, they started getting a little bit lazy, where they were getting money from their parents, or Grandma. And so, you know, it just kind of became worse and worse. So I had an idea who I got it from. Because they did take an HIV test, and they came back and told me. They were really mad at me, calling me all kinds of names, and stuff like that. Then, about a day, maybe two days later, said, "Oh, it was a false positive."
I never thought about it until way later on. Because, at that time, tests were taking at least two weeks. So I figured he knew. But he never said anything about it. And me, being who I am, I just didn't think, "OK, we're going to have to start using protection." Because I was young. I was probably in my mid-20s at the time. The person I was dating was like seven years older than I was.
It's just one of those things, where you never think about it ... until after.
What did you think, and how did you feel, when you first found out that you were positive?
Believe it or not, I was OK with it. I think the doctor was more somber than anything else. He was a doctor that everybody liked. He was cute -- you know, in a military uniform. Everybody that I knew really liked him a lot.
But the thing is, he was an infectious disease doctor, which was good. And he was more somber. He just came in, put his hand on mine, and said, "Mr. Lopez, I hate to say this, but your test came back positive."
And I said, "OK."
It didn't hit me, or anything. I was OK with it. Of course, they gave me medication to take when I got back home. It was just, I was dealing with it, probably a lot better than most people.
I knew it was through sex. Because I didn't do any IV drug use or anything like that. I think that's why, like I said, that's why I was more calm, and knowing ... But the funny thing was, when I was in the hospital, I kept on seeing this commercial, saying, "Know your status." And when they told me about my status, I'd probably seen it twice after that. And that was it.
I usually tell people when I do talks in my sessions that I'm not mad or anything like that. God gives you what you can handle. And I think, since there are really not that much advertisements on TV or anything like that, it's easier for me to kind of come out, in a sense ... especially to my communities that I serve.
You said that the doctor was wearing a military uniform. Where were you living at the time? Was it a military base?
No. I was living in Phoenix. It was through IHS, Indian Health Services. They have military uniforms that they wear sometimes; Corps uniforms, as they call them. His was white, so I don't know which corps -- I think it was Navy Corps, or something like that. Because the nurse, actually, that took care of me -- he was a nurse later on -- he became the STD person, if I remember right. And then he became my case manager. So, we've always had a long history together.
I could be free with him, talk to him about whatever was going on. It was just amazing that we kind of followed each other, in a sense. But the doctor had left. And then after he had left, there was one, two ... probably about four other doctors that I've seen. And now, I currently see my doctor, who was my diabetes doctor.
Oh, you're diabetic, also?
And this is in Tucson, with your current doctor?
No. I actually travel from Tucson to Phoenix for my appointments. I know there are some great HIV clinics in Tucson, but I feel comfortable going back to Phoenix and dealing with my own doctor, who I have a relationship with, and who knows me. In fact, he nominated me for the International Indigenous Working Group in D.C., in July. I was very happy.
That's awesome. And it's still through Indian Health Services that you're seeing him?Yes.
You were starting to talk about disclosing to your community. How did that go? First, with your family, if you've done that, and then with the wider community.
The first time I disclosed wasn't really to my community; it was to my parents. I was supposed to be going to tribal council and talking about a person living with HIV/AIDS. My parents were both on dialysis, and sickly. I didn't tell them anything for two years. And they said, "Oh, we're going to go with you." I was like, "OK."
So you shared it with your parents?
So I shared it with my parents. My dad was hard of hearing, number one. He was an amputee from diabetes. He was also on dialysis. Hypertension, as well. So, he was watching TV. My mom's, basically, the same medically, except for she didn't have any amputations. But her hearing was a lot better than my dad's. So, when I was reading this letter, my dad heard my mom crying and asked her what's wrong.
She said, "Tyrone said he has AIDS." After that, my dad just kind of looked at me and said, "Son, I can't do anything for you."
I said, "I know. But you can pray for me."
After my mom got through crying, she wanted to know more. But a month later, she died. And then two weeks later, my dad died. So, within two months, I lost both my parents. In fact, I buried my dad on Christmas Eve.
Have your relationships with family members changed at all since they found out and/or you told them you were positive?
No, not really. My roommate at the time, who was the one that took me to the hospital, every time I went to see my doctor, would ask me what my viral load was; what my CD4 count was; have I missed a dose of medication, am I taking it on time, when I'm supposed to; and everything else. He was a great friend to have. And I still see him in Tucson.
My two brothers, we talk. They treat me like everybody else. Our relationship hasn't changed. My sister: like I said, I think she knows, because in 2006, on World AIDS Day, I actually came out, and they were broadcasting it on the radio for the nation. So I figure she probably knows. But she hasn't said anything about it. My mom's sisters, probably both of them know. One of them, in particular, said, "I wish I was there when you told your mom." And I told her, "I probably wouldn't have told you."
Because it took me a while to decide how I was going to tell my parents. And so, of course, I had everybody lining up, shaking hands, and giving me hugs and everything else. The one that stood out the most was my god-sister. She came, and she was crying, and said, "How come you didn't say anything?" I was like, "I don't think it was the right time, at the time." And I told her I'd be fine. No problem.
And she just would not let me go for a while. She just held on to me. It was, like, OK. But when I went back to my village, I had to talk to people. Of course, they were drinking, and drunk, and like, "We heard you on the radio!" I was like, "O-kay."
But one of my dad's friends who was standoffish, he motioned for me to come over. I knew he wanted to say something, but he just didn't know what to say. He shook my hand. And I told him, "I'll be fine. Don't worry." I said, "If that's what you're thinking about, you know, about my health, don't worry about it. I'll be fine." He just kind of smiled and went back to what he was doing.
Other than that, like I said, coming out to the community is a little bit different sometimes. My predecessors ... the first one in the family: Nobody knew he was getting hate mail.
Wait. Your predecessors? I'm sorry.
Those that were positive that came out before I did on the nation. One of them was getting hate mail, and they didn't find out until after he had passed on.
So far, I haven't really encountered any backlash or anything like that. I think that is since a lot of our people have been out -- not a lot, but quite a few have been out -- and we invite them for World AIDS Day and for Native American Awareness Day so people can have an idea. We have a client that's 72 years old, if I remember right, and she comes out. She talks. And she talks in O'odham, which is our language. She tells her story in our language, and then we have a translator for those that don't know.
With all that, I think a lot of it has come down where a lot of people are kind of OK with it -- maybe still a little scared, but not quite.
It sounds like there's been some change around that. The people who have come out as positive before you had different experiences, but maybe through them doing that, it's opened the way for loads of people to be open and receive education, and all of that.
Yeah, I think that's what has happened. I'm grateful for them. But I feel sorry that they didn't quite make it to this point. People just didn't understand what was going on with them, they were still afraid and, like I said, sending them hate mail. I would think it would be tough on them at that time.
Definitely. Since we're on the topic, tell me a little bit about your background. It sounds like you have a big family. And you have referred to your nation, but what nation are you part of? Which area did you grow up in?
I'm part of the Tohono O'odham nation, but I lived in Phoenix the majority of my life. My family: my dad had 12 brothers and sisters. The majority of them are gone; all the boys are gone, at least. There's probably about five women left. My oldest aunt is in her 80s. My youngest is probably getting toward her 60s. On my mom's side there was, to my knowledge, four of them. They're four sisters. Two of them, my mom and her youngest, have passed on. The other two, they're still around.
I wonder how it is to be a member of the LGBT community in your nation, and in the area where you grew up.
I came out probably a long time ago. First of all, my dad took me to breakfast one day. There was a gay bar in Phoenix, and it was called 307, and I would go there. I was getting in there when I was like maybe 15, 16. He'd seen me go in there one time. He asked me straight out, "So, are you gay?"
At the time, I didn't date a guy, and I didn't date a girl. I told him, "I don't know. I just enjoy watching the shows." He was like, "OK." And so he left it. But then -- I think it was about a year or two later -- I decided I was gay, because I was looking at more men than anything else.
I was trying to tell my mom; it took me three tries before the last time. I turned off all the lights, unplugged the phone, took her into my room and sat her down and told her I was gay. She's like, "We know. You've been bringing [more] guys over than girls." I was like, "Oh, OK." It was kind of funny at the time. My mom, she told me, "Well, if you're going to be dating another guy, then you need to learn how to cook for sure. Because, like they say, 'a man's heart is through the stomach.'"
And so I'd learned how to cook beforehand. But I think they'd already seen the signs when I was a lot younger.
Are you in a relationship now? How has being positive affected your relationship history, and your being in relationships with men?
I haven't been in a relationship since I was diagnosed. There was a person that wanted a relationship with me, and I kept on putting it off. Then, one day -- I think it was in December -- there was a feast day, and we're talking and we're driving. He was asking, "When are we going to start dating?" and this and that. I finally told him that I was positive, and I'd rather not date; I'd rather have a really good friend.
I met him at the Man2Man seminars. He goes, "Why not? I use a condom. That's nothing." I was like, "OK, but I still want a friend first, before I do anything else." I still keep in contact with that person, and we're still really good friends. But I haven't really dated anybody, probably since 2003.
Can you talk a little bit about the kind of work you do?
I do HIV prevention. I work for the Tohono O'odham nation, and I've been working there since 2008. There was two of us until last year; now there's three of us. I usually do the HIV 101 and then I go over a little bit of the history.
They're kind of interested about that. But then I usually tell them, too, that I've been tested: one was in 1997, and the other one was in 2003. I go in front of them and ask, "Look at me. Do you think I'm positive or not?" Some of them guess. Some of them know me because they've been in my session in jail. I usually tell them, "If you've been in my session in jail, don't say anything. You can't participate."
In jail? So this is prevention education you were doing in jail?
I do prevention on the nation in the different villages. We also go in jail and we do the STDs. Right now, usually on Wednesdays, I go do STD screenings for chlamydia and gonorrhea; and then I draw blood for syphilis and HIV, unless they opt out. Then, I do educations on Thursdays in there. So most of the guys and most of the ladies know who I am.
Sometimes I do some of the schools, like the BIA schools (Bureau of Indian Affairs schools); sometimes we get in there. Right now, they're really focusing on the Ames test, so it's been harder for us to get in there.
The Ames test? Can you talk a little bit about what that is?
The Ames test is just a standardized test that they do to see who to graduate. Like, they should be at a certain level of reading, writing and arithmetic. So, right now, they're more focused on that than anything else.
But we do go into certain schools. I just basically walk around and ask them, "Do you think I'm positive or not?" And I write [my status] down on a piece of paper. Usually, I have them raise their hand, or stand up, if they think I'm not, or if I am. Then I break out the paper and show them. The majority of the time, some of them are like, "You could be my dad." And it's like, "Oh, maybe if I had you at 14. Depends." Most of them are OK with it.
I usually tell them, too, it's like if you ever go to a conference and they talk about HIV and AIDS, they say, "How many of you guys know someone with it? Raise your hand." I tell the kids, especially, "Don't raise your hand; stand up." I say, "Be proud that you know somebody with HIV and AIDS that's out there, that you can get information from, and that has no problem talking to you up front. Don't be raising your hand; stand up and be proud." And I say, "That's fine. You know, I have no problem." I say, "You can even tell them my name. I don't care."
And I usually tell them, when I go to those sessions, "Well, what about rural? Because you're leaving those out. What's going on with Native Americans?" Because we're finding out that a lot of Native Americans are getting diagnosed too late. They may live maybe a couple of years, then die. Our rate of death is high. With the other minorities, they can live a lot longer because, one, you have all kinds of organizations that are focusing on them. But, as far as Native Americans, we don't have that. We may have it once in awhile. Like, social media, we don't have that. We're just standard. We make phone calls. We maybe text. That's probably as high tech as we go. But as far as, like, Los Angeles: They may have transportation, where they can put up posters and say, "This is a Native American." They may understand why to get tested, and everything else. But like I said, you're talking about a nation that's about the size of Connecticut, and three people working in that.
We're also talking international. We haven't gone past the border, yet, of the U.S. and Mexico; because our reservation does extend into Mexico, as well. So we haven't done that. But we do have a community; we work under Community Health. And they have an O'odham in Mexico program. So, if we're looking for somebody, or need a translator, they're usually there. We try to help each other help. The Community Health representatives help us out, as well, if we need help. They may volunteer for health fairs, or district days. We have all these little things that go on throughout the year. So, if one of us can't make it ... but we usually try to do it in twos.
It's funny, because sometimes, like ... We just bought this warming gel for the women. And they're like, "I don't know if I'll like that." I said, "Well, take two. See if you like it. Try it." Then I'll see them later on: "Do you have any more of those?" It's like, "Yeah, how many you want?"
Or even the female condom: A lot of the ladies, they've never seen a female condom. And the first question is, "When did this come out?" And it's like, "Uh, I don't know. It's been out for a long time. That's all I can tell you."
How do you manage your own health while being so busy? How has your health been now? And how have you managed diabetes and HIV ... and life, basically?
Well, diabetes, I go up and down with. Right now, the last time I did it, it wasn't so good. It was kind of up.
Your sugar level was up?
Well, my A1C, which measures the sugar level within three months. And so, the second-to-last, I was at a 10, which isn't good. The last time it was, I think, a 9.4. So it came down some. Managing diabetes is a little bit harder because I can't really get to the gym like I'd like to. We do have an hour for lunch, and we do have a gym on the nation. But half the time I just can't get to there, because we're either doing something or making calls, or whatever -- checking up on people. I would like to because, when I first started, I was at 185 pounds. Now I'm at 230, so I gained quite a bit of weight. I would like to cut that back, at least to 200, and then go from 200 back to maybe 185. So it's kind of hard.
How have your CD4 count and viral load been recently?
My CD4 count is any place from 6 to 800. And my viral load is less than 50.
Undetectable, but they want me to go a little bit more. And it's like, well, I don't know how to do that. It's the medication!
Have you been OK? How has the HIV med regimen you've been taking treated you, basically?
I had a hard time with it at first, because I was taking, I think it was, Sustiva [efavirenz, Stocrin] and Combivir [AZT/3TC] when I first started. My body was still kind of getting used to it. Then they gave me Sustiva and Truvada [tenofovir/FTC]. Now I'm on Atripla [efavirenz/tenofovir/FTC], and it tends to work out. The only bad thing about Atripla is you can't eat two hours beforehand, and two hours after. They'd rather have you take it before you go to sleep. So, between 9 and 10, I'll take it.
But, sometimes, I haven't eaten,then maybe I'll have a little snack in between. But as far as the regimen goes, I haven't had too much side effects. I did have insomnia once in awhile, and I think that's just because of everything on my mind. You know, just like anybody else, at night, you tend to think, "Oh, I didn't do this. I didn't do that." So that insomnia plays a role.
As far as everything else, I think I'm one of the lucky ones that hasn't really had too much side effects at all.
Could you compare how you feel about having HIV now to your feelings when you first found out that you were positive, and how have they changed?
At first, like I said, I really didn't tell anybody. And when I was working in Phoenix, I was working with Native Health. We were doing outreach to the GLBT groups. We'd distribute condoms to the male prostitutes, the female prostitutes. I got to know a lot of them and asked them if they'd been tested recently; and if they hadn't, why they should; if they used condoms or not.
Once in awhile, I think about it, and it's like maybe this is what God intended me to do. You know? I think about it sometimes, and it's like I don't think I was a really angry person about getting this, HIV and AIDS -- or, AIDS, actually, now. I don't think I was really mad at anybody. I was probably mad more at myself than anything else. But then I figured this is probably what He wanted me to do.
And I accept it. I accept everything that I do. I try to be a little bit more better at what I do now than anything else. But sometimes it does get me. Because you do have clients that aren't adherent to their medications -- they're not taking their medications like they should. And you just want to grab them and shake them, like, "You can do this! Come on!" But it's up to them, as well.
And I know finding out you're positive [is not easy.] Like I always say, change is hard. Especially now, since you're positive. Now you even have to change your way of relationships. You even have to change your way of eating healthy, or trying to eat healthy -- especially if you don't have money. I mean, how are you going to get your medications? Granted, they have an ADAP program. Indian Health Services also has medications there that you can get. But it's just the thought; you know, trying to get to Indian Health Services to pick up your medications.
Because right now transportation is the number one issue for us. Some of our clients will call us and say, "Can you pick up our medications?" And we'll be happy to. But some of them are still not out. They'll have us meet them someplace else, which is OK, but we encourage them to try to come out, at least to their families. We usually tell them, "You don't have a scarlet letter on your forehead saying HIV. It's more like nobody can tell."
So that's what we try to do. But for me, it's been an experience. And I'm happy with it.
Is there anything else that you want to share or add at the end of this interview?
The only thing I probably should add to it is: Know your status. Get tested. Because that's what we always say. It's best to know your status. I know it may be hard at times. Because you know what happens behind the closed doors, you guys; people know what they do behind there. I think that's what mostly scares a lot of people ... they know that they've been doing risky behaviors. And they may be ashamed of it. And they probably have an idea what their status may be. But, you know, get it confirmed.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.