MR. KOJO NNAMDIWelcome back. It was 30 years ago this summer that HIV/AIDS was first diagnosed and hit the public health scene. For those who are HIV positive, these past 30 years have certainly brought great progress but a positive diagnosis still comes with serious stigmas attached. Some say the best way to combat such stigma is to just live a normal life. But just trying to live a quote-unquote "normal life" can have its challenges. How are you facing that challenge and how are people who are living positive, giving back?

MR. KOJO NNAMDIWe thought we'd just ask a few people who are doing just that. Joining us in studio is J'Mia Edwards. J'Mia is a testing coordinator for the United Medical Center which was formally Greater Southeast Hospital. She joins us in studio as she did some time ago, J'Mia, good to see you again.

MS. J'MIA EDWARDSGood to see you, too.

NNAMDIJoining us by phone from Pittsburgh, Pa. is Carlton Rounds. Carlton Rounds is the founder and President of Volunteer Positive, the first international service organization helping HIV positive people volunteer for short-term international service. Until recently, he was assistant director of the state university of New York's Center for International Programs. Carlton Rounds, thank you for joining us.

MR. CARLTON ROUNDSWell, thank you very much for having me. I'm really appreciative.

NNAMDIAnd joining us by phone from New York City is Regan Hoffman, editor and chief of POZ Magazine. Regan Hoffman, thank you for joining us.

MS. REGAN HOFFMANKojo, thank you so much for having me.

NNAMDIJ'Mia, our listeners may remember the last time we spoke with you. You had been featured in the movie "The Other City." You were raising three kids, having a hard time finding work, obviously, you have now found work. You are testing coordinator for United Medical Center. But it's my understanding that a lot has changed in your life since that time.

EDWARDSYes, Kojo, a lot has changed. I've now gained housing and I'm working now. But I'm trying to adjust to -- being in a hospital setting, I still -- I'm now seeing the discrimination from some of the nurses about me being positive and being so open. I was just told last week that I live my life too transparent. And like I told her, that me being HIV positive and me being a convicted felon, that is my life. And I have loved to -- I have learned to embrace that.

NNAMDIAnd in a lot of ways, transparency is what got you where you are right now. How do you enjoy being a caregiver?

EDWARDSI enjoy it. And now I don't look down on people. I know that everybody is the same.

NNAMDICarlton, you've said that one of the most important things for HIV positive people is to see themselves as caregivers, not just care receivers, why is that?

ROUNDSI think, you know, there are a number of reasons why that's important. I think for all human beings to have the experience of being able to give care is, you know, something that is incredibly important for everyone's development. But I think over the last 20 years, and I speak for myself, you know, my initial experience with the HIV positive community was that we were all dependent on literally the hand outs of others, the medications that were yet to be widely available.

ROUNDSEven in some ways, you know, the whim of the landlord of whether or not you could keep your apartment or keep your job or keep your status in the community. And I think that over time, you know, those political, social, and emotional and economic wounds made it very difficult for people who are positive to feel empowered and to feel good about their lives and, you know, simply put, when you do something for somebody else, it takes your mind off of your own situation, and it reconnects to, you know, why life is important.

ROUNDSAnd for me, I stand on the shoulders of a lot of HIV-positive people who are no longer with us, and I remember the wisdom and the things that they would say to me is, don't forget, and don't stop helping, you know. And if they hadn't sacrificed and they hadn't been willing to give care, I wouldn't be where I am now. So I feel like in a way it's part of a cultural legacy of positive people that maybe isn't as celebrated as it could be.

NNAMDI800-433-8850 is the number here if you have a comment or question. Do you know anyone you look at as an HIV-positive role model? Call us at 80-433-8850, or simply go to our website, Kojoshow.org, join the conversation there. Send an e-mail to kojo@wamu.org. Regan Hoffman, some people respond or react to a positive diagnosis by walling themselves off from other, but POZ magazine seems to be saying reaching out may in fact be the key.

HOFFMANAbsolutely. You know, I understand why people are afraid to come forward. I myself didn't publically disclose for almost ten years. I told my family though, and that was really key in my health, because telling someone who cares about you that you need help and you need emotional support, by the way, help and emotional support that you absolutely deserve, can be a really good first step to, you know, connecting to the care that's gonna save your life.

HOFFMANBut I can tell you that coming forward ten years into my diagnosis publically, which was a terrifying experience in my mind, in reality was an incredible experience. And as Carlton was saying, you know, the support of the community is there, and there are so many HIV-positive people who want to support other people newly diagnosed, or maybe not newly diagnosed, but newly coming forward and on POZ.com, which is P-O-Z dot com, we've got a huge community of people talking to each other in the forums, you know, e-mailing each other, supporting each other, and it's a great, great way to not feel alone.

HOFFMANYou know, something I tell people a lot is people who got HIV, who contracted the disease, didn't do anything bad, and the stigma that's put on us is something that we can't allow ourselves to bear the burden of. I mean, we really have nothing to be apologetic for, nothing to be embarrassed for. We've just done things that other people do every day, and when we did them, the virus was present.

HOFFMANWhen other people did them the virus wasn't present. It doesn't make us a bad person, it just makes us an unlucky person statistically. So really finding the acceptance in yourself that you haven't done anything at all to be ashamed of, and that you deserve support, love, and connection to medical care is really, you know a key step to doing well and to living a long and healthy live with HIV.

NNAMDIWhich brings me back to you, J'Mia Edwards. If you had not been transparent about your life, if you had tried to keep yourself walled in, if you tried to keep everything secret, how do you think your life would be, and how do you think your personality would be?

EDWARDSI think for one if I was to keep myself like that, I probably wouldn't have housing. I probably wouldn't be outspoken, I probably wouldn't be recognized within the community.

NNAMDIWould you also probably be very angry?

EDWARDSI probably -- I wouldn't so much say angry, because I've gotten over that part.

NNAMDII remember that.

EDWARDSI would probably me more of the emotional piece and the mental piece because a lot of people fail to realize it is a mental piece to being positive. And until you can overcome that mental piece, then you will be able to accept the disease itself, and it took me a process in order to come to where I'm at now.

NNAMDIJ'Mia Edwards is a testing coordinator for United Medical Center, former Greater Southeast Hospital. She joins us in studio. Regan Hoffman is editor-in-chief of POZ magazine. She joins us by phone from New York City. Carlton Rounds is the founder and president of Volunteer Positive, the first international service organization helping HIV positive people volunteer for short-term international service. He joins up by phone from Pittsburgh, Pa.

NNAMDIWe're taking your calls at 800-433-8850. Carlton, few people realize how otherwise simple things can become difficult once you're HIV positive. For example, international travel. Talk about how that becomes fraught with difficulties.

ROUNDSWell, you know, there are hard obstacles and soft obstacles at any time when you engage in international travel, and one of the things that I feel very passionate about is connecting to humanity, you know, beyond a national border. And when I become positive, I became to -- I'm gonna say more aware that if I was going to fly with my medications into some countries and to some parts of the world, that they could refuse me entry.

ROUNDSThat I could completely healthy, I could be, you know, ready to do service, but that country could see me as a threat for whatever reason. So my good intention in effect could be met with a sense of criminalization. Thanks to President Obama a few years ago, the United States began to alter its policy allowing individuals to come into the United States who are HIV positive, and many other countries around the world took that as a nod to relax their policies as well.

ROUNDSThe trouble with that is you're always in a situation when you travel internationally about whether you need to disclose or not, because you can say I'm not positive, I'll be fine, and I'm going to come into the country for two weeks and I'm gonna leave. But what if you needed health support? What if something happened to your meds? What if -- and where would you find support? And also, why is it so difficult for you to be visible as a positive person as a global agent of change?

ROUNDSWhereas that stigma in a sense makes it seem as though HIV positive people don't travel, don't contribute, and they're terribly weak and need help 24 hours a day. And certainly there's been a change in this experience for most people over the last number of years. That's why Volunteer Positive for me is such a labor of love. I feel now that I can travel and actually because I'm positive say I think I have something to offer here.

ROUNDSI have an experience of living with a disease, of managing the stigma, and as the other panelist was talking about, going through the stages of anger and disappointment and pressure and people challenging you about being too open about your status. But I know for -- there's one of me, but there's millions of people living with HIV, and we all need global visual reinforcement that we are part of the conversation and we're part of the future.

NNAMDIHere is...

ROUNDSSo when I...

NNAMDIGo ahead.

ROUNDSWhen I feel a little bit intimidated and I think, oh, God, I don't really want to disclose, I wonder if this is gonna get me in trouble, I always think it's worse if I don't, because if I don't, I'm saying to all the people who are positive that are around me that I don't know are positive that they need to keep quiet too.

NNAMDIJ'Mia Edwards is shaking her head here, nodding in approval of what you're saying. You find the same thing?

EDWARDSYes. I always try to disclose regardless of -- the way I think about it is, either you're gonna like me for who I am, regardless of my status. If my status makes you not want to be a friend or an associate, you were not meant to be in the beginning.

NNAMDIEither way. You'd be interested, Carlton, also in what Deborah in Fairfax, Va. apparently has to say. Deborah, you're on the air. Go ahead, please.

DEBORAHYes. Thank you so much. I just wanted to say thank you, Carlton, for your idea and what you guys are doing. My husband and I work in southern Africa in the township of Cape Town specifically, and we have found that taking those young people, HIV-positive people, and HIV-negative people on trips outside of their country has been extremely beneficial not only to their own heart in allowing them to see just some other people and reaching out in different ways and different community development projects, but it's also, as they returned, has given them a social standing in the community to say, you know what, we can all make a difference, and it doesn't matter your status.

HOFFMANAnd then for others on that trip who are HIV negative to see how someone who is HIV positive just copes with everyday life. And what starts as a very daunting task of trying to take, you know, 20 to 30-somethings across borders with some medical needs becomes something that is an extremely life-giving experience for everybody.

NNAMDICarlton, I hear you nodding in approval.

ROUNDSYou know, as someone who leads trips with individuals, you know, for some people, the medical protocol is one pill a day. I mean, for myself I'm lucky, at the moment I take one pill a day. I take a shot every once in a while, so I'm pretty mobile. And I think it's -- and I'm a big guy and strapping, and I can lift big heavy objects and move them around.

ROUNDSAnd, you know, I remember meeting a small boy around eight years old in Mexico about a year ago. Somebody told me he didn't like taking his meds. So I sat with him and he sat by himself, and very clearly he was a child that people didn't touch because of HIV status -- physically touch. And in my broken Spanish, we were playing cars and I said to him, you know, I know you don't like to take your meds, how do they make you feel?

ROUNDSAnd he said, they make me feel kind of sick. And I looked at him and I said, my meds sometimes make me feel sick too, but I take them, and I said, look how big I am. And of course in Spanish he says, yes, gordo, like, yes, you're fat and -- which he meant in a nice way. And then he moved a little bit closer to me and we played cars together a little bit more, and there's something about shared experience across borders and language and even generations.

ROUNDSI said, you know, I take my meds every night at nine o'clock. How about we make a deal, at nine o'clock every night I will think of you and you will think of me, and we will take our meds at the same time. And...

NNAMDIAnd Deborah, you should...

ROUNDS...and he said okay. Now, the thing is, a nine-year-old boy in Mexico helps me with my compliance.

NNAMDIWait a second. Something is going on in the studio, and it is shaking here. That's why -- ah, I guess we are experiencing some kind of earthquake or movement here. But Deborah, you should know that South Africa is of particular importance to Carlton, because Carlton, when you learned that you were positive in 2005, you got on a plane and flew to South Africa for work, did you not?

ROUNDSI did. I found out I was positive and I thought well, okay. I know I'm not gonna die next week. I still have this program to try to run, so I got on a plane and went to South Africa, and went to my first HIV support group in Cape Town. And like the previous caller, I had spending times in the townships around Cape Town where being positive you couldn't speak of it, yet I knew that I was looking at communities that had HIV rates that were pushing 40, 50 percent.

NNAMDIWow.

ROUNDSSo being visible, telling the truth about who you are is always powerful. It doesn't mean that there aren't consequences sometimes, but I agree that, I mean, sometimes people are afraid, and then because they know you they're not afraid...

NNAMDIThat's true.

ROUNDS...of themselves anymore. Maybe they're not afraid for someone in their family, or they realize that there's a narrative of strength that now they can be part of because they've seen one before.

NNAMDIDeborah, thank you so much for your call. Getting back to domestic, J'Mia, you say that finding housing may be one of the biggest challenges that a lot of HIV people face, and I knew that the last time we talked that was one of the bigger challenges that you were facing. Why do you say it's such a big challenge?

EDWARDSIt's a big challenge for the simple fact of if you have a family of more than three people, certain apartment complexes you don't qualify for. And certain apartment complexes or housing developments, they have to go through a certain process to be able to receive your voucher for the housing.

NNAMDIOkay.

EDWARDSSo it's kind of -- you have to look for what is available and then the waiting list is long. It's like over 500 people are on the waiting list for housing.

NNAMDIWhich brings me to this question, Regan Hoffman. Is the U.S. government or local governments doing enough to provide leadership for helping those living with HIV? Oh, I think we lost Regan Hoffman. Are you there Carlton Rounds?

ROUNDSSure. I can certainly answer that, and J'Mia, I feel for you and your experience with looking for housing. I had an experience after I tested positive and came back from South Africa, I was very depressed. I went through a lot of soul searching, who am I in this world now, what is this status mean, and tried to find housing and support in New York City. And the process was so dehumanizing, that it literally made me feel sicker, and it did make me feel sick.

ROUNDSAnd what I was not prepared for, I guess, as I waited in line for housing and for service and support, was the amount of suffering I encountered in my own country. And figuring out how to take that into yourself and survive it, was more difficult that dealing with the virus, was really the injustice of HIV in our culture, and that, I found, harder to survive. But the number one thing is that without secure housing, you cannot have secure health.

ROUNDSAnd there is not being enough done. I constantly get the message of hush, take your medicine and hush up, as though HIV is a medical issue. It is not a medical issue. It is social, economic, and human rights issue, and one has to always remember that it is a great teacher, and it should never be simplified. It's got a lot to teach us.

NNAMDIAnd I mentioned earlier that the building was shaking. That's because it would appear we are experiencing, or just experienced, an earthquake here in Washington D.C., which WAMU 88.5 news will be following and giving you an update on very shortly. So you were...

ROUNDSThat's because our topic is so important.

NNAMDII think so. It's an earth-shaking topic that we are discussing here. But J'Mia, had you ever felt one of those before?

EDWARDSNo.

NNAMDIOkay. But go ahead, you were going to say something.

EDWARDSWhat I was gonna say, Carlton, when I received my voucher, I've had my voucher almost a year -- almost two years I believe it is, there's no programs to transition a person off of a voucher into home ownership. And I know plenty of other positive people who do work and who can transition off of that voucher so we can recycle the vouchers to help get the waiting list down, but there's no program.

EDWARDSSo to me, I feel like in the District we might need to look towards in trying to, you know, help transition individuals off of their vouchers so we can recycle them. Because I would rather be a homeowner, but I just don't -- I have -- it's some services there, but I'm talking about services particularly for people who are HIV positive, since that's the waiting list that's such an issue. We need to teach those individuals how to transition.

NNAMDICarlton Rounds, you get the last comment.

ROUNDSWell, J'Mia, you know, the story began that HIV-positive people got sick and died, and care and support and their story was always supposed to be a short chapter. And what is the most phenomenal thing, is all the people who have come before us, we are now going to be writing our own chapter and it's going to include what we want on our terms, and it's gonna be filled with our stories, and our challenge now is to make our stories and to bring them back home and to share them because HIV is something that affects us right now, but after HIV, it'll be something else, and after that it'll be something else.

NNAMDIAnd Carlton, I'm afraid that's all the time we have.

ROUNDSAnd what we're learning -- we're learning how to survive as human beings in the world no matter what the challenge...

NNAMDIThanks for sharing your story with us. Carlton Rounds is the founder and president of Volunteer Positive. J'Mia Edwards is a testing coordinator for United Medical Center. J'Mia good to see you again.

EDWARDSGood to see you, too, thanks for having me.

NNAMDII understand that we had a 5.6 earthquake here. Thank you all for listening. I'm Kojo Nnamdi.