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Raising Voices Against HIV On The Reservation

MICHEL MARTIN, HOST:

I'm Michel Martin and this is TELL ME MORE from NPR News. Now, we go behind closed doors, as we often do on Mondays. That's where we talk about issues people usually keep private. HIV/AIDS is still that kind of topic for many people, perhaps especially, according to our next guests, for members of the Navajo Nation.

Members of the Nation live on the country's largest Indian reservation, located at the crossroads of several Southwestern states. Health professionals there have been seeing a steady rise in new HIV cases among the Navajo over the last decade. The Gallup Indian Medical Center has reported that the number of new HIV patients has more than doubled in the last 10 years. That's while infection rates have stabilized across the rest of the U.S., according to the Centers for Disease Control and Prevention.

We wanted to talk more about this, so we've called upon Melvin Harrison, founding executive director of the Navajo AIDS Network. We also have with us Dr. Jonathan Iralu, an infectious disease consultant who works at the Gallup Indian Medical Center. And they're both with us from member station KANW in Albuquerque, New Mexico.

Gentlemen, thank you both so much for speaking with us.

MELVIN HARRISON: Thank you so much.

DR. JONATHAN IRALU: Thank you.

MARTIN: Dr. Iralu, could you start by telling us about the trends that you've been seeing? When did you start to become concerned that HIV was becoming an issue in the Nation?

IRALU: I've been working with the Navajo people since 1994 and, in the 1990s, we used to see somewhere between five and 10 new cases a year. During the decade 2000 through approximately 2007, we would see anywhere between 15 and 20 new cases per year. Back in 2009, we saw a surge in the number of cases, up to 40 new cases per year, and that rise has been sustained over the last three years. So, this past year, we saw 39 new cases.

MARTIN: What do you think is behind that? Part of it is we're testing more. Starting back in 2006, the Centers for Disease Control advised that every American be offered the right to know their HIV status between the ages of 13 and 64. So, in response to that, the Indian Health Service and other health care providers in the area are doing more testing. But we also believe that there is actually more local transmission and there is a true increase in the number of cases.

IRALU: In the past, HIV was thought to be a disease acquired in the big city and then people would come back home to spend their last days with their family, but starting around the year 2000, we started seeing people coming down with high fevers, headaches, sore throat, rashes, suggestive of acute HIV infection. And then the blood testing proved that, in fact, these were brand new cases being acquired locally.

We know, also, that HIV is transmitted when people's inhibitions are lowered through substance abuse and we found that among our new cases, up to a half of them have alcohol as one of their risk factors. And when we first start seeing cases, the risk factor of men who have sex with men was by far the largest risk factor for acquisition of HIV on Navajo. But over the last few years, there has been a increase in the number of cases acquired through heterosexual transmission, so that, in fact, in 2011, the risk factors were almost exactly identical.

MARTIN: Well, let's just pause there for a second and bring Melvin Harrison into the conversation. Mr. Harrison, I understand that you're HIV negative, but you came to be involved in HIV activism because of your own history with substance abuse. Could you just tell us a little bit about that, if you don't mind?

HARRISON: Yes. I became involved in early 1988. It was after going to a substance abuse treatment for alcohol and drug treatment, where I learned about HIV and it really scared the heck out of me. I really didn't know what to do.

After treatment, I come home and I walk into this meeting at Chinle Hospital about a group of people trying to put a nonprofit program together at Chinle Hospital. It was really amazing how that all happened. I think it was the second meeting that I took over the meeting and decided to do the work because - just from how I was feeling. I just felt like something needed to be done at that time.

That's where I felt my connection to the people that we were serving because, you know, I think today when you talk about HIV, I think most people are very, very afraid of confidentiality being broken and once that happens, they feel the rejection. And that's what I felt during my years of abusing drugs and alcohol.

MARTIN: Can I just jump in, Mr. Harrison? Because one of the interesting things you were telling us is that when I was listening to Dr. Iralu talk about the way the disease is transmitted and what they've noticed about the differences over the years, one of the things that struck me was this is so 10 years ago, so 15 years ago in the general population. And it sounds like there's been a lag in the Navajo Nation in the way that the disease has been transmitted.

But one of the other things that struck me is that you were telling us that there are some cultural reason why perhaps people might not have been able to protect themselves, given how much knowledge there already is about HIV/AIDS, like there were some cultural reasons why it wasn't as discussed. Do you mind talking about that a little bit?

HARRISON: Oh yeah. In most small communities it's really hard to talk about sex and, you know, homosexuality and so forth. But on the Navajo Nation and other small native communities, it's very, very, very difficult to talk about those topics. And so when I began to do HIV prevention education back in 1988, I really got scolded from my elders was you don't talk about this, my son. He says we don't think it's here and it'll never get here. He says if you're talking about it you're wishing it on the people. And I didn't know what to say. So, and I remember those days. I'd come home and talk to my wife, you know, like sometimes tears running down my face, I can't go back out there. I was hammered today by my elders, you know?

So those are the challenges. And in our Navajo tradition we have a kinship. Like if someone's even related to me, like I'll have a sister clan-wise that's sitting here, I can't talk about sex. I'm not supposed to talk about sex.

MARTIN: So Dr. Iralu, how do you work around that? You have to educate people and you have to tell people when presumably, when you figure out that they've been infected you got to figure out how to talk about it. How have you figured out how to work around that?

IRALU: I talk about how things have changed dramatically since the institution of anti-retroviral therapy back in the year roughly, 1995 and of 1996 and how it's dramatically changed the death rate on Navajo. So we used to lose up to 30 percent of our patients per year. Now the death rate is way down to around five percent. And those who pass away are usually dying of things other than HIV/AIDS these days.

And I often tell my patients that it's much easier for me as a physician to treat the HIV disease than it is for me to treat diabetes.

MARTIN: Hmm.

IRALU: So we try to talk in a positive light, not in a negative one.

MARTIN: I'm speaking with Dr. Jonathan Iralu of the Gallup Indian Medical Center and Melvin Harrison of the Navajo AIDS Network. We're talking about the increase in HIV/AIDS in the Navajo Nation. It's our Behind Closed Doors conversation.

Mr. Harrison, could you just pick up the thread there for a minute. What are some of the things that you've noticed have been helpful in talking to people and in doing your work after that initial difficulty and people saying you're wishing this on us?

HARRISON: We sort of turned it back towards the elders and say OK, if this is something we can't talk about, how can we talk about it? We've actually have received some help with some of our elders to help us go out and do education. And since then we've had a number of people who are HIV-positive themselves who have come out the closet and began to talk about HIV over the last 20 years.

But it's still challenging because across the nation, even if I went to my local high school in Chinle, Arizona, we would find that a high percentage - I would say from 60 percent of our students will think it's a gay man's disease. But we, I think we've come so far along enough now that we can really just have to, you know, take the beating and continue to do our education. But there's just very little of those because I think more people are more sensitive about what we're trying to do now.

MARTIN: What keeps you going?

HARRISON: Whoa, that's a good question. You know, this has been a very challenging work. You know, there's been some good times and bad times. But I can remember - oh, my God - back in 1988, I wasn't quite sure how long I was going to do this job, you know, after recovery, just to start out.

I remember sitting up on Canyon De Chelly. If you ever go to Chinle, Arizona has a small beautiful canyon, it's a miniature Grand Canyon I call it. It's a beautiful canyon. I would sit up there and I'd ask the creator, you know, give me something to do. I mean I need to do something. And here, within a few months of that, you know, I get this job around HIV, so sometimes I say this is the work of the creator.

And, but in talking about where, sometimes, you know, my challenging days, you know, early on right after I began to do full-time work in 1988, I met this young man, and how I met this young was by walking into our local grocery store. My wife, I and my son were walking to this grocery store after the sun had gone down and the young man touched my arm, says your Melvin. I said yeah. And he says can I talk to you? And I said sure. And I turned around and we walked outside and he was parked in this other unlit area. When we got there the first thing he said was Melvin, can I get a hug? And I said sure. He says Melvin, I have HIV. I have AIDS. I kind of like suspected. I was shaking too. This young man was hanging on for dear life and he just held onto me. And then he's says Melvin, I'm also gay. I didn't know what to do but he let go and we talked and I worked with him for the next six to eight months. He hadn't told anyone in his family. And I would visit him and I would take him to his health care provider down in Phoenix. It was like a five hour drive but I would take him down whenever I could. I would hang out with him. We would go to church and we'd do certain things. We fought. We laughed. We cried and he'd chase me out of this house.

(SOUNDBITE OF LAUGHTER)

HARRISON: And, but he became a very real close friend. He taught me of what I was going to be doing for whatever long. And one day I visit him and I said, it was in the evening and I stopped by and says how you doing? And when I walked into the house I saw that he had separated a lot of stuff and a lot of his belongings on the floor. And I said what you doing? And he says, he took a hold of my hand and he says Melvin, I'm going to check out. He says I can't do this anymore. He says Melvin, I'm keeping you away from your family. You've got work to do and all this. I said no, you're not going to do this. Let's get you well. We talked and we laughed, we got away from, you know, talking about all that and we talked about some good times, bad times and I was there for about two hours and we got back to saying well, he says let's see what we can do tomorrow. I stood up to go and he took a hold of my hand and he says Melvin, there's only one thing I need to tell you whether I check out or not, he says, keep doing what you're doing. Your Navajo people need you. And I took both of my hands and I just held onto him, says I'll see you tomorrow. You know, I had tears running down my face. This was in 1988. This young man hadn't told his parents, his loved ones and he wouldn't let me tell anybody. And he would tell them like he has cancer and other stuff. And, but I walked out that evening, I went home and thought about him that evening and prayed and got word the next day that he had checked out.

MARTIN: What you mean he checked out?

HARRISON: He died.

MARTIN: Oh. I'm sorry.

HARRISON: Yeah. He - that's what people used to say when, you know, like in sometimes like in HIV he says, you know, when they give up they say I'm going to check out, you know? And I think that's what keeps me going sometimes. But there's a lot of other things too. You know, like in the early days, like in the late '80s and early '90s some of these young men and women didn't have a chance it seems like because there was, you know, all they had was AZT and certain things and, you know, and it was really challenging for them. So those are things that keep me going, thinking about those young men and women, especially this young one that I started to work with the same year that I started to do this work and...

MARTIN: Hmm. I'm sorry. It's hard.

HARRISON: It's been - it's a part of me now.

MARTIN: It's hard.

HARRISON: A part of my wife and I have, you know, I'm married and have two children. I actually am a grandpa right now so my grandchild's outside.

MARTIN: Oh, well, congratulations.

HARRISON: Oh, thank you.

MARTIN: We don't want to keep you from him or her.

HARRISON: Yeah, her.

MARTIN: So Dr. Iralu, what about you? What keeps you going in this work? It's very challenging work.

IRALU: Oh, yeah. Some things very similar to Melvin's, my Christian spiritual practice and then really loving and supportive wife and children outside the hospital. And then in the hospital itself it's been a really wonderful experience working with Navajo people. They are very gracious, kind, thankful people and every day this is very reaffirming. And I work with many patients who have been afflicted with HIV for many years. And when I see the bravery with which they face their illness I'm overwhelmed and I think that keeps me going inside the hospital.

MARTIN: Do you see the numbers moving in the right direction or are we not there yet?

IRALU: One very important concept is that if people know their diagnosis they can be treated early in the course of the disease and then you can prevent spread of the HIV virus by controlling the level of HIV virus in a person's blood. So we think that early diagnosis equals early treatment, equals decreased transmission. So what we're working on right now is a media campaign to get people out there aware of their HIV status.

MARTIN: Before we let you go, Melvin Harrison, I understand that your group has come up with kind of an unusual event to raise awareness about HIV/AIDS. It's this coming week and I understand that you are doing a local standup comedy show?

(SOUNDBITE OF LAUGHTER)

HARRISON: Yeah. We are. It's actually one...

MARTIN: Tell me about that.

HARRISON: It's actually one of the huge Navajo or Native comedy, standup comedy shows. It's called the Ernie & James Comedy Show and it draws a lot of people. And this is a free event. So we knew that if we were able to put such a show up we would get a big audience and this would be a great opportunity to talk about some HIV, talk about AIDS and then also to offer rapid HIV testing to those ones who would like to get tested and it will be at the Chinle Junior High School on March 20th.

MARTIN: Are you going to do standup?

(SOUNDBITE OF LAUGHTER)

HARRISON: No. I don't think so.

MARTIN: You're not going to add that to your repertoire?

(SOUNDBITE OF LAUGHTER)

HARRISON: Maybe. Well, I have a - Dr. Iralu probably - I have a lot of funny stories about our times and people and how they talk about HIV and what they think HIV is. We could probably do that.

MARTIN: OK well, I don't know. He'll have to check with the medical board about that. I don't know if he's going to, if he can be making fun of...

HARRISON: Yeah. I probably could...

MARTIN: Melvin Harrison is the founding executive director of the Navajo AIDS Network. Dr. Jonathan Iralu is an infectious disease consultant for the Indian health service. He works at the Gallup Indian Medical Center near the Navajo Nation.

And I thank you both so much for speaking with us. Good luck to you both in this important work.

IRALU: Thank you so much.

HARRISON: Well, thank you. Transcript provided by NPR, Copyright NPR.