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Young African-Americans Discuss Fighting HIV/AIDS

MICHEL MARTIN, host:

I'm Michel Martin, and this is TELL ME MORE from NPR News.

Later in the program, the chess king of Dupont Circle talks strategy and life on the boards. We saw it on the street.

But first, we want to talk about HIV/AIDS. It seems that we don't talk about the disease that much anymore. But the epidemic continues to take the lives of many Americans, especially young African-Americans.

Last week, as part of a Congressional Black Caucus' legislative weekend, the Black AIDS Institute and LIFE AIDS held their fourth annual Community Town Hall on HIV/AIDS. I was invited to moderate the panel.

Phill Wilson, the chief executive officer of the Black AIDS Institute, opened the event with some new information from the annual report, "We are the Ones We've Been Waiting for: the State of AIDS in Black America."

Mr. PHILL WILSON (Chief Executive Officer, Black AIDS Institute): When you look at the AIDS epidemic today, when you understand the reality that it is a black disease, when you know that nearly 50 percent of the estimated 1.2 million Americans living with HIV and AIDS today are black, when you know that 42 percent of the new AIDS cases among men in America today are black, when you realize 67 percent of the new AIDS cases among women in America today are black, when you understand that 70 percent of the new HIV/AIDS cases among young people in America today are black, you know that anything less than an ambitious goal would be immoral.

And so we set that goal. We know that we're nowhere near a cure. We know that we are far away from a vaccine. We just had devastating blow last week when Merck announced their vaccine did not succeed and, in fact, failed in every level. But we're not talking about eradicating the virus. We certainly cannot get there in five years.

But we can do four things. We can reduce the HIV/AIDS rates in our communities by 50 percent over the next five years if we all come together. We can increase the percentage of HIV positive African-Americans who know their HIV status by 50 percent if we all do our part. We can increase the percentage of African-Americans living with HIV who are in appropriate care and treatment if we all step to the plate. And we can definitely reduce the debilitating stigma that's happening in our communities if we all just say no to stigma.

MARTIN: The event continued with a panel of young people, all affected in some way by the AIDS virus. Many shared personal testimony about the role HIV/AIDS plays in their lives. Many offered suggestions about what could and should be done to help combat the disease.

Pamela - Stefanie Brown, the director of the NAACP College and Youth Division. Justin Smith, Congressional Black Caucus project coordinator for project style. Kurt Thomas, an advocate of people living with HIV/AIDS. Quentin James, president of the South Carolina NAACP College and Youth division. Hill Harper, an HIV/AIDS activist, writer, also an actor on "CSI: New York." And Joell Royal, co-founder of LIFE AIDS.

I asked Joell how she first learned about HIV and AIDS.

Ms. JOELL ROYAL (Co-founder, LIFE AID): The first time I heard about AIDS was back in '95. I really didn't know what it meant. I just knew that people died from it, and I'm really hitting home with having losing a parent this past December, December 1st, actually.

MARTIN: I'm very sorry to hear that.

Ms. ROYAL: It was just kind of one of those things that I knew as a kid that people died from it.

MARTIN: So what made you want to get involve in LIFE AIDS?

Ms. ROYAL: It was more or less of a personal commitment to self in educating black college students, but primarily focusing on women of color.

MARTIN: Kurt? Will you tell us your story?

Mr. KURT THOMAS (AIDS Advocate): My personal struggle is that I was a youth pastor at a church. And I'm HIV positive. And the pastor found out that I was HIV positive and decided that he no longer wanted me to be the youth pastor because I was HIV positive. And he felt that it was going to be a detriment to the church. So it impacted me at that point in my life, just for the simple reason that I was doing a great job, but because I have a disease, I was stigmatized and actually thrown out within a week. They found out on a Friday and the next Friday, I was gone. And they flew me away on a vacation, told the church that I had to go away because someone was sick, and gave me a thousand dollars, and that was it.

MARTIN: When did this happen? What year was this?

Mr. THOMAS: This happened in 2006.

MARTIN: Wow, 2006. Did you ever confront the people who shunned you? Did you ever have any - have any opportunity to go back to them and say why. Do you have any desire to?

Mr. THOMAS: Right now, I have a lawsuit pending.

MARTIN: So you're talking that way.

Mr. THOMAS: Yeah.

MARTIN: Maybe it's my naivete, I'm actually quite shocked that in 2006, that you have received that kind of reaction. And I just wonder if anybody else is - you're not - you're not - you're not - what have you been doing since?

Mr. THOMAS: I'm a family specialist. But I also am starting a project. It's called the Leper Project. And if anyone's familiar with the Bible, you know that there were 10 lepers in the Bible and only one leper came back to say thank you. And so I perceive myself to be that one leper. It is just going to -this is going to impact people just to say thank you, to help people to understand that you may not be infected but you're affected, and that's life changing for all of us.

I haven't gone to church since then - let me say that. And I haven't done anything, as far as church is concerned - I don't hate God or anything. I don't think that God has anything to do with it. I just think that people need to be educated. And I think that one's education is key, not only in church but just in general, in life. I think that people will be more accepting to deal with people that are HIV positive. And they won't ostracize or, you know, push them away.

MARTIN: Thank you for that, Kurt. Thank you for that.

Quentin, tell me how you first heard about HIV/AIDS.

Mr. QUENTIN JAMES (President, South Carolina NAACP College and Youth Division): I really can't pinpoint it but I do remember growing up in church. And all of a sudden you started seeing, you know, some members who were sick, who were coughing a lot during service. And, you know - mom, why is brother Samuel, you know, so sick. He has AIDS, you know. And from there, my parents educated me on what it was and how it was affecting some of their friends from their generation.

But I guess, on a more personal level, kind of why I decided to get involved with the fight, my generation's definition of masculinity. How we, you know, judge our manhood by the amount of women we can sleep with or just being in the locker room, we're just hearing the conversation of how we demean our women kind of sickened me.

And so my senior in high school, I decided not to play sports to get away from the whole I'm-a-big-tough-football-player mentality and start, you know, organizing on, you know, things not only HIV and AIDS but just other things. You know, we don't have to go here and listen to this kind of music to have a good time. We don't have to define our manhood by playing sports and, you know, sleeping with women when we can do other things. So it's really that pure motivation.

MARTIN: Hill Harper, if I could ask you the same question.

Mr. HARPER: Both of my parents are physicians. And there's a lot of discussion in the household about health on all fronts and so I was introduced to those things. During graduate school, I decided to write a film with my cousin called "One Red Rose." And we decided to have the female in the film be HIV positive. That helped me be, you know, to learn more in the process of writing that movie.

And then I did another movie and I wanted to meet with as many people who are incarcerated and also living with HIV and AIDS. And there's one person I met in particular who helped me with this character, what type of things was this character going through. And he talked about how sometimes the bottom of his feet feel like they're on fire. And he personally had buried 95 friends.

And at the end of the day, I consider myself an activist, an advocate for issues regarding black people. And if you're an activist in any shape or form for the health of black people, AIDS has to be a central issue. And unfortunately, many of our leadership leaves out this issue.

MARTIN: Why do you think that is?

Mr. HARPER: I think that we can go through all the different stigma, reasons and all these different issues about stigmas from nation issues, homophobia - all these issues. But it comes down to, for me at least, the reason why is because we don't demanded it of them. We're complicit in them being able to advocate and being able to sidestep this issue. And the fact that we can go to a town hall in the convention center that has thousands of people in it and it's speaking on some issues. And then we have this issue here. This place should be packed. This should be fought here. There should be people…

(Soundbite of applause)

Mr. HARPER: …spilling out into the street, wanting to be in here. But the reason why it's not is that we - all of us here - have allowed our leadership to get away with not making this a priority issue.

MARTIN: So I wanted to ask each of you, do you still feel that part of the community is in denial about the scope of the problem? Do you think it's because we associate the disease with homosexuality or was it just sexuality, period? And the community, we don't want to talk about that? Justin?

JUSTIN: I think that's a big part of it. I mean, you think we don't talk in - you know, I don't think it's really specific to the black community. But we don't have open and honest dialog about sexuality in America, in general. You know, I think even though sex is something that we see on every minute on the television, if we turn on BET, MTV, anything, there is, you know, sex, promoting and selling things. But that doesn't necessarily mean that we have the types of nuanced and complex conversation around sexuality that I think are much more needed and necessary.

MARTIN: On the one hand I hear you saying nobody wants to talk about sex. But to my way of thinking - and maybe I feel this way because I'm parent and I'm about the business to try to figure out what my kids ingest and what they don't ingest both, you know, nutritionally and from, you know, some of the media environment - it feels like we talk about sex all the time. You cannot turn on the radio without having sex involved. You cannot turn on the television without having sex. So I guess I just don't understand what this is not-talking-about-sex thing.

Mr. HARPER: It's not the issue of not talking about sex. It's the issue of not talking about consequences of sex. So there's a difference between talking about sex and then talking about the consequences. You could look at any form of my business - the entertainment business - and the entertainment business is very quick to show you the glitz. And certain artists or certain songs can make a young brother feel like his manhood is inextricably linked to the size of the rims on his car. My goal, in all my conversations with groups that I talk to, I want to talk about consequences first - good and bad.

MARTIN: Okay. Do you want, you know, we can start talking among - as a group. I don't see any reason to keep it between, you know, you all up here and us up here. So tell us your name as you're - of course, you all knew who we are and we'd love to know who you are. Sir.

Mr. RODNEY McCOY (HIV Health Educator; Counselor, Whitman-Walker Clinic): I thank you both. My name is Rodney McCoy. I'm an HIV health educator, a counselor with Whitman-Walker Clinic and I actually do HIV counseling and help wellness classes to the inmates who were in recovery and off to jail. I've been doing HIV education, program directing for over 20 years. And I've been living with the virus for six years. And I think one of the things that's important for me, is first of all being honest and open of the fact that I am a gay man, I'm living with HIV, and that I'm also about to be ordained as a deacon in a week. So…

(Soundbite of clapping)

MARTIN: Congratulations.

Mr. McCOY: Thank you.

MARTIN: When you made the decision to choose to disclose your status, to be open, what was that like?

Mr. McCOY: Scary. Scary because the stigma is real. But I was also real clear that the person who infected me was not honest about his status. And I made a real conscious choice not to do that to someone else. And when we talk about sex, I wanted to get back to that because I don't think we talk about sexuality. We don't. Having a sexual image or sexual phrase flash on the screen or come up on the radio does not mean you're talking about sex. Talking about sex, first of all, is acknowledging that it's not just heterosexual. It's bisexual. It's asexual. It's I'm-not-sure-what-I-am. It's not just heterosexual.

And the second thing is - it's ironic I'm saying this as a soon-to-be deacon -is the church. They've not discussing on sex. The way that we don't talk about HIV or AIDS is influenced from the pulpit. We have to change that. We have to work with our pastors and say this is an issue. And Brother Kurt, the church needs you. If that one church chose not to welcome you, as it says in the Bible, shake the dust. But there's another church waiting for you because, obviously, God put that on your heart. And I think that's true for all of us. We've got to speak in to start really talking, to say it's not a gay thing but it is a gay thing, too, and we've got to talk about that.

You know, people are living with HIV, those of us who are have got to disclose - to say this is real.

MARTIN: That was Rodney McCoy. He's an HIV health educator, a counselor. He's HIV-positive. He was a member of the audience at the Fourth Annual community town hall on HIV/AIDS. I moderated the event that was sponsored by the Black AIDS Institute and Life AIDS. And as you can imagine, the panelists and audience have a lot more to say about all of these topics. You can hear more by going to our Web site at npr.org/tellmemore. Transcript provided by NPR, Copyright NPR.