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Archive for September, 2008

Cases of HIV Detectable in Semen, but Not Blood

Posted by pozlife on September 27, 2008

Five percent of HIV-positive men in a French study had detectable HIV in their semen even when no HIV was detectable in their blood, say the authors of a study published in the August 20 issue of AIDS. This result stands in contrast to a Swiss position paper earlier this year that declared it nearly impossible for an HIV positive person with no sexually transmitted infections (STIs) and an undetectable viral load in blood for at least six months to transmit HIV to an uninfected sex partner.

The authors of the Swiss paper stated at the time that they wanted to provide an accurate view of the HIV transmission risks for serodiscordant couples—where one partner has HIV and the other does not—who want to have children through natural conception. Currently, the only recommended method of conceiving a child for couples where the man is HIV positive and the woman is HIV negative is artificial insemination with semen that is proven free of HIV.

To determine the possible risk of HIV transmission for serodiscordant couples, Anne-Geneviève Marcelin, PharmD, PhD, from the Université Pierre & Marie Curie in Paris, and her colleagues examined paired blood and semen samples from 145 HIV-positive men who had used the services of an assisted reproductive agency in France. Some of the men gave multiple samples over time, so Marcelin’s group was able to compare 264 paired samples in all.

Marcelin’s team found that the amount of virus was almost always consistent between blood and semen samples. In 85 percent of the paired samples both the blood and the semen had undetectable levels of HIV. In 3 percent of the samples, both the blood and semen had HIV present. Seven of the 145 men, however, did have detectable virus in their semen, but none detectable in their blood sample. All of the men were on a stable antiretroviral (ARV) therapy regimen, and none had an STI. The men were also taking a wide variety of ARVs, including those known for getting into seminal fluid. All of them were also later able to provide a semen sample that was undetectable for HIV.

The authors point out that these men could have infected their female partners if they had attempted conception through unprotected sex when they had detectable virus in their semen, but not in blood. The researchers give several reasons for possible fluctuations in seminal HIV levels, including undetected STIs, adherence challenges and ARVs that fail to penetrate seminal fluid. Other reproductive specialists who work with serodiscordant couples have pointed out that prostate or urethra inflammation, which may not be due to any infection, could lead to increased HIV production, even in the presence of ARV drugs.

Search: Pregnancy, conception, viral load, semen, Anne-Genevieve Marcelin, Universite Pierre & Marie Curie

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Life Expectancy With HIV Increases Dramatically

Posted by pozlife on September 27, 2008

A 20-year-old HIV-positive person starting antiretroviral (ARV) therapy today can expect to live, on average, to the age of 69, according to new calculations published July 26 in The Lancet. The study authors say this is a life expectancy increase of 37 percent over projections for 20-year-olds starting ARVs during the early years of combination treatment. 
 
HIV-positive people have frequently asked their health care providers how long they will live with the virus, especially with so many effective ARV options to choose from. Few studies have attempted to answer this question-until now.

To determine life expectancy among HIV-positive patients, an international roster of researchers joined forces and reviewed the medical records of more than 43,000 people living with the virus in the United States, Canada and several European countries. The study participants were split into three groups: 18,587 people who started ARV treatment between 1996 and 1999, 13,914 who started treatment between 2000 and 2002, and 10,854 people who started treatment between 2003 and 2005.

The researchers predicted that a 20-year-old person starting ARV treatment between 1996 and 1999, the early years of combination ARV therapy, could be expected to live an additional 36 years, to the age of 56. This increased significantly, however, as time passed. A 20-year-old who started treatment between 2003 and 2005 was expected to live an additional 49 years, to the age of 69.

The average life expectancy for a 20-year-old who remains HIV negative, at least in industrialized nations, is an additional 60 years—with death occurring, on average, at the age of 80.

HIV-positive people who didn’t start ARV treatment until their CD4s dropped to 100 were expected to live 10 fewer years than people who started therapy when their CD4s were above 200. The authors also determined that HIV-positive people with a history of injection drug use were expected to live 10 fewer years than those who never used injection drugs.

In a letter in The Lancet commenting on the study, David Cooper, MD, from the University of New South Wales in Sydney, questions whether starting ARV treatment even earlier, at a CD4 count above 500 for instance, may bring life expectancy even closer to normal. Dr. Cooper hopes that the international Strategic Timing of Anti-Retroviral Treatment (START) clinical trial, which is investigating earlier initiation of ARV treatment, will provide the answer.

Search: survival, life expectancy, long-term, antiretroviral, antiretrovirals, ARV, treatment, medications

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AIDS 2008 Newsroom

Posted by pozlife on September 26, 2008

This newsroom only contains news, viewpoints and first-person stories from AIDS 2008; for in-depth coverage of key research presented at the conference, visit our AIDS 2008 home page on The Body PRO.

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Thembi Ngubane: Mother, Activist, South African … and Proof Positive That You Can Thrive With HIV

Posted by pozlife on September 26, 2008

August 3, 2008

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When she tested HIV positive in 2002 at the age of 16, Thembi Ngubane of South Africa scarcely had an idea what HIV meant. Now 23, she is one of the foremost HIV activists on the planet. She received worldwide recognition in 2006, when National Public Radio featured a stunning audio diary she kept in 2004 and 2005. Here at the XVII International AIDS Conference, she has been a near-ubiquitous presence, giving speeches and even co-chairing a major session on the state of the HIV pandemic. And did we mention that she has a 3-year-old, HIV-negative daughter? We were fortunate enough to have the opportunity to sit down with Thembi and hear her incredible story.

Can we start by hearing the story of how you found out that you were positive?

Thembi Ngubane
Thembi Ngubane

I tested HIV positive in 2002. I was 16. The reason why I went for an HIV test was because my ex-boyfriend at that time had gotten sick in the past few months, and then he died. No one would tell me why he died. No one would tell me what he had. I felt it was my responsibility to actually find out for myself if he did have HIV or AIDS. The only thing to do, was for me to go for an HIV test.

You didn’t know for sure that he died of an AIDS-related illness?

I didn’t know for sure, but when I saw him when he was sick I could see the symptoms. At school they used to tell us that if a person is sick, if he has HIV, you could see the symptoms when the immune system is very weak. The person would lose hair; the person would get so thin. He had some of the symptoms, but I was not sure because I was not very well-informed about HIV.

What happened when you went to get tested?

It was scary, because of my being healthy and looking healthy, yet suspecting that I might be HIV positive. It didn’t seem real. Also, because I wanted to prevent so many things: I didn’t want to die, I didn’t want to get sick, and I didn’t want people to know. It was a matter of going and finding out for myself and keeping it to myself.

When I was told that I was HIV positive, I could not believe them. I kept on asking them, “Why do I have HIV? Why do I still look healthy? Why am I not thin? Why am I not sick? Why am I not feeling sick? I feel normal and I look normal. Why do I have HIV?”

It was very hard for me to accept, but the reality was there. It was either accept it and take responsibility, or ignore the fact that I had HIV.

When you went to get tested, did you go all alone?

Yes. I went alone. It was not planned. I didn’t plan it. I was just curious, because at that time in Khayelitsha it was 2002 and they just opened a loveLife youth center. I wanted a reason to go inside, but I didn’t want people to see me. Because if people saw me go into loveLife, they would think that I’m having sex.

It was very hard for me to go there. Since I was alone, I thought, “Why don’t I just sneak into loveLife?” So, I was sneaking around in there and just taking a tour. It was too much for me, because I could see condoms. I was like, “Oh man, condoms — in front of these people? There are old people here.”

I felt like maybe people here understand. I thought, “Let me ask if they can do an HIV test.” Lucky for me, I met someone that I knew who has HIV and he was a counselor.

I asked him if I could have an HIV test. He asked, “Why do you want to have an HIV test?” I said, “At school they tell us that if you ever, ever, ever have sex, you must have an HIV test. So I thought, why not?” [Laughs.] But I was covering the whole thing up!

loveLife is a clinic or a center? What is it like?

loveLife is a youth center. It does many different things: you go for birth control; you go for checkups for STDs [sexually transmitted diseases]; you go for HIV tests and they then refer you to the nearest clinic; you go there for counseling; and you go there for sex education.

What happened when you got the news? Who told you and what happened?

The counselor told me. He first explained the procedure and everything. I was just sitting there, just rolling my eyes and thinking, “Well, you can say whatever. I don’t look sick, so I’m not.”

So poof! The news was “You are HIV positive.” I argued with him for 10 minutes. I argued with that guy. I mean, I argued with that guy. I really wanted an explanation. I ended up believing, no, I’m not sick. These people are just trying to scare me. What the hell? I don’t look sick. These people are just trying to scare me.

But as soon as I got out of the center, I was starting to hit reality. I was facing people, and I felt like everyone could see that I was HIV positive. I felt like I was losing weight at that moment. I felt like I was going to die tomorrow. Everything just came so quickly. It was like an earthquake!

I panicked. In my panic, I felt I had to tell someone. [Laughs.] Sometimes I think back and I’m like, I did a stupid thing: I have just gotten tested and I’m confused, and then, poof, I go and tell my boyfriend. But I thought he was in danger. I thought, “If I really am HIV positive and my ex-boyfriend didn’t tell me he had HIV, and now I have HIV, what about Melikhaya? I owe it to him. I have to go and warn him. I have to go and tell him. He must go for an HIV test to see what’s going on.”

There I was. I went to him. Lucky for me, we met on the way. I said, “I’m coming from loveLife.”

He was like, “loveLife? What are you doing in loveLife?” Because people who go to loveLife are people who have STDs and who go for birth control.

I said, “No, I just went for an HIV test.”

“And?” he asked me.

“They say I’m positive.”

Then he laughed it off. He said, “Come on. You don’t look sick. You know what a person who has HIV looks like. You are not that sick, I mean come on. They are wrong, you know? They’re just trying to scare you!”

That was it. I felt like it’s not a big deal. Why should I make it a big deal? I just went home. I must put it behind me. I must forget about it. I went home and I didn’t tell anyone up until I returned to Melikhaya’s place to find out that he had told everyone in the house. He just turned over and was like, “Did she just tell me that she has HIV? I mean, HIV causes AIDS. Oh my God! She’s going to die and I’m going to die!”

There he was telling his mother that both of us are going to die because I tested HIV positive. It was a drama of the year! It was a drama. They all wanted to kill me, if I can say so, because at that time no one understood. I also didn’t understand. I wasn’t even sure if I was going to make it. I was just defending myself. I’m not going to die. I’m going to go to the clinic. I’m going to get something. There must be something that can be done. But I was only saying those words just to stop them from saying all those things about me.

Did Melikhaya go and get tested at that point?

After this drama with me being HIV positive, his family actually called me and they separated us. They said we must break up. We broke off, but I said to him, “I don’t mind our relationship ending, because I also have a choice. If I wanted to date someone that has AIDS and I don’t have AIDS, I would also think twice. But you don’t even know whether you are HIV positive. The only thing that you can do for yourself, and for me as a favor, is to go and have an HIV test.”

I don’t care about our relationship. We can break up because HIV is not going away from me. We broke off and he went for an HIV test. Luckily, he tested HIV negative. He later came to the support group and I was so pissed because the support group is for people that have HIV. He was coming from school and he came with all these pamphlets. I didn’t know what he was doing there, because he probably didn’t have HIV and yet there he was. I thought that maybe he had come here to rub it in.

He comes, and he’s like, “Thembi, I just went for an HIV test and I tested HIV negative. I’m sorry I didn’t understand at first. I panicked. I’ve read about HIV. I went to counseling and I understand that you are not going to die.”

I had all this information that he was picking up the whole week at the libraries and putting one and one together. He asked for me back and I was like, okay. But I said, “You know, you’re negative and I’m positive. It’s not going to work, but let’s try.” [Laughs.] So we tried. But he told me that he was in the window period. They say that he’s HIV negative, but he must go back again to see because the virus sometimes gets into your blood and hides.

He went again after three months and he was HIV positive. His family said, “You were HIV negative and you went back to her! You went back to her to take the virus! You come back, and now look at you, you are sick!” No one understood. But we understood because we know how HIV works. We understood that he had HIV maybe before I even met him.

You can never tell, you know. You never know who has it and who hasn’t. You never even know how long you have had it up until you go for an HIV test. It was a matter of, “I don’t blame you, Thembi. I don’t blame myself, because I was in a relationship before you. It’s not like just because you tested HIV positive before me that I’m going to blame you. It’s not like that.”

Ever since then, we tried to convince our families and educate them. My family didn’t have a problem at all. My mother is Christian. It’s interesting, because my mother is Christian and my grandmother is a traditional healer. I come from a really interesting family., and I am strictly science. I’m strictly science, yet my background is half religious and half pseudo science.

My family was very supportive. My grandmother didn’t try anything, she just said, “You know what? HIV/AIDS doesn’t have a cure, but you can take your treatment. I’m not going to do any remedies for you because you must not take them. The only thing that you have to do is to go to the clinic.”

My grandmother also said, “You have to pray to God. That’s the only thing you have to do. You have to pray to God that everything will be all right.”

I had support from my family and I took Melikhaya under my wing. We tried to convince his family, tried to educate his mother. At the end of the day, we couldn’t fight [about this anymore] and now we are one big, strong family. We have Onwabo and everyone is happy. [Onwabo is Thembi’s 3-year-old daughter.]

That’s right! You got pregnant after you tested positive.

Yes.

Can you tell me a little bit about that?

[Laughs.]

That is also one of the decisions that sometimes you think, “Maybe I shouldn’t have done it. But anyway, it happened.”

Just before I tested HIV positive, just like any young woman, I always wanted to have a family. There was a break point where I first [said,] “This HIV has taken everything from me. I won’t be able to get married. Who would marry me?”

All these questions were popping up until Melikhaya and I got through some talking and were like, I want to have a kid, because everyone was screaming this stupid stuff in my head, like, “The kid is going to get sick. The kid is going to get infected. You’re going to die and the kid is going to be an orphan. Maybe the kid will be a strange kid because you won’t be there and the father won’t be there. Maybe the family won’t treat the bridewhen you are not there.”

All of these things were coming to me, and they made me feel like I’m useless. This HIV thing really does kill you, kill your love, or kill your dreams. The only thing I have to do now is sit like this and wait to die. Just wait until I die.

There was a moment when I felt like, you know what, since I was going to a support group the support group really helped me. I realized no one can be me. I’m only me. I can only make decisions for myself. If I choose that this HIV is going to an obstacle in my life, that’s what it’s going to be. But if I choose, I’m going to fight it. I’m going to live my life the way I wanted to live it before I had HIV. It’s just going to get along with that. That’s how it’s going to happen.

I was like, okay, I’m going to push it. I’m still young. I don’t want to die. I don’t want to just be forgotten: “Thembi died of AIDS.” That’s all I had. Nothing behind, you know.

I didn’t do it for a selfish reason, to have a baby to love me, or something like a legacy to leave behind. I did it because I wanted someone to love for myself. I wanted to love him. I wanted to give him everything. I wanted her to love me back. I don’t know how to put it. That’s all I wanted to do.

There was a chance, I was told, that the baby might be HIV-positive. I prayed to God that the baby — I know I didn’t do anything wrong. The baby won’t be HIV-positive. God will not punish me like that. I had to believe. I said, Melikhaya, I believe. Even if the baby is HIV-positive, there is hope out there. The baby might be HIV-positive, but who knows? The cure can come out anyway, anytime. It’s not like it’s the end of the world and we have to wait and say, “I’m going to have a baby when the cure comes.” That’s not going to happen. This is life. This is reality. This is about me. It’s not about HIV. It’s all about me, what I want in life, and what I believe in.

We talked to my doctor. Lucky for my daughter, he was very understanding. He took me through the procedure and explained to me what exactly is going to happen when I get pregnant. He should check my CD4 count, check my viral load, check my CD4 count, check my viral load.

Everything just meshed there and then. It meshed. Everything just meshed. I was put on nevirapine (Viramune); I was taken off efavirenz (Sustiva, Stocrin). I was put on another medication. [inaudible] CD4 count was [inaudible] too high. It was perfectly in health and I was also perfectly in health.

I said I’m not going to breastfeed. There are likely chances — I got on nevirapine and my baby got AZT. I knew when I give birth, on that day, before they could even come back with the results, I already told my family, no, Onwabo is going to come out negative. I knew it.

The second test, everyone was like, “Oh my God, Thembi, we hope that you didn’t breastfeed him. We hope that you were not careless with him.” I said, no, don’t worry.

Onwabo was HIV-negative, and now she’s crazy! [Laughs.]

She’s three, right? So —

Yes. She is so crazy now! She’s crazy. But I’m happy. I wouldn’t say that I wish — of course I wish I didn’t have HIV, but I love my life now. I wish I didn’t have it. If they would say, what’s the one thing that you want? I would say, you know what? I want to live a positive, normal life as long as I can.

I wouldn’t say I want to be negative, because I know that’s not going to happen. But if I would still have a chance to go back and change, I would change everything.

I feel lucky. I know that everything happens for a reason. God put me in this situation. I’m in this situation for a reason, but a lot of people died just in front of me. I’m still here. Why? I ask myself. Yes, I’m taking medication. A lot of people die while taking medication. But I’m still here. Why? I’m here for a reason.

What is that reason?

I’m here to inspire people. I feel like I’m here to inspire people because with me being here, with me struggling, getting sick, going through some of the crises, going through a relationship, having a baby, and still coming out and talking to people and say, “I’m here, I’m a woman, I’m HIV positive, and I’m living my life normally.” It can happen! It can happen. But I always say that prevention is better than a cure. Prevention is better than a cure.

If I was someone now, if I was ten, I would not stop to have sex, I’m telling you. I would think twice or I would be well-informed. I would actually know the consequences. Not only the consequences of getting pregnant, HIV, emotional stress, depression, all that kind of stuff. That strains a person. That kills a person more than HIV. I would really get myself educated ifI would be in that point now.

I feel like anyone as I feel like it also in my situation.

How do you think you and Melikhaya got through your diagnoses together? It’s kind of a miraculous and unusual story.

It is. It’s amazing, you know. I think it’s all God’s work because a lot of people were like, even in my family, they were telling Melikhaya, “Why are you still here? She’s going to die, can’t you see?” I was sick, totally. I was crying. I was begging [him] to leave me alone. I was begging [him] not to come and see me because I was so sick and I thought I was going to die, but he said, “I’m not going to go anywhere.”

This was before you started treatment?

Yes. This was before I started treatment. He would beg me, because at first I didn’t want to start ARVs [antiretrovirals]. I didn’t want it at first. I said, “No, I’m not going to take them.” Because there were all these myths surrounding us, telling us that if you take them, you miss one day, you’re going to die. If you take them, you’re going to deform into this. You’re going to get big breasts, big boobs, and all that stuff. You’re going to be out of shape. You have to swallow [them] and they’re going to make you nauseous the whole time.

I was like, I’m not ready for that responsibility, but Melikhaya was there for me all the way. He said, “Thembi, the only thing that’s going to help you is to take your ARVs.” When I didn’t want to go to the clinic — it’s actually amazing. He was not even ashamed of me, but I was ashamed of myself. The only way I could go was to cover myself with a blanket. He would just take me on his back with my mother, and they would take me straight to the hospital.

I think it all goes well, because everyone thought that maybe he was crazy or something. Everyone kept on asking, “What kind of love is that?” Even his family. My family was, even my family, my grandmother was asking, “Why are you still around? You are young and you should be out there enjoying yourself. She’s going to die, can’t you see?”

We got through it and here we are. We’re still going strong here.

How did your Christian faith help you get through all of this?

It helped me a lot because I believed. Actually, it helped me to believe. It gave me hope. It helped me to believe, to actually say I believe. I put everything in God’s hands. The only thing I have to do now is to take my medication, take my treatment, and just put my health first and everything else I leave to God.

It was up to him. I just had my faith in him. My Christianity really helps because there were times when I wouldn’t want to take the pills. I would cry, cry, cry, cry, cry, and then I would cry, and then I would pray and I would think.

I’m still here. Why hasn’t God taken me? This is my opportunity. I still have time. I can take this pill. I still have time. Even if it’s one second, I still have time. Why hasn’t he done anything? It’s because he doesn’t want to. Because he doesn’t want to, so why should I say, “I beg him and say I’m going to wait up until God, up until I die, because I’m going to die”? How can I say that? I still have that one second, that moment, to take those pills and be alive.

I had faith and my [inaudible] although there was a time when she thought I was going to be [inaudible].

It’s a really sad story, but now sometimes I look back and I laugh at it. I can’t believe that I was sick. Even when they tease me, they’re like, “Oh, when you were sick! Oh, you were crying! Now you’re fat! [Laughs.] You’re telling us whatever you want!”

It’s kind of, you know, the sad part that I’ve got. It was different, because all those years I was doing all that stuff, I have not disclosed to my father, which was a no, no, no. Remember, before I started to do the diary I wanted to do the diary and the diary really helped me as the way of coming out. It was a way for me to actually come out. I really wanted to do it. It was really helping me, talking to the diary, recording alone. I was talking to it and just pouring my heart to it and what I really liked was that the diary was not talking back. The diary was not judging me. It was just there when I needed it.

The only thing that was in front of that was the fact that I have not disclosed to my father.

This was the audio diary that you did for NPR for year where you recorded your thoughts and they put it on the radio and on the Internet.

Yes. That’s the diary.

How did that all start?

[Laughs.] I think that was the time when I got a break, actually. It was a breakthrough for me. It all started when I joined the support group and Joe Richman, who’s the producer of Radio Diaries, was living in South Africa for five years. He was doing this documentary about youth and HIV. We met in Khayelitsha. He came to our support group. We were 20 and he interviewed us because he wanted to do this story.

I was telling the guys there, “You know what, guys, I’m going to give this story only if we can go there privately, one by one, because I’m not going to pour my heart in front of you guys, I’m sorry! [Laughs.] But that guy I don’t know and that guy’s from America! [Laughs.] I live in South Africa, so I’m safe.

That’s when I started to do the diary. Joe interviewed me and he gave me a tape recorder. He’s like, “You know, I’m going to give you a tape recorder. You must just play with it.” I was excited, thinking that I was going to get a tape recorder like this, a fancy, smart, sexy tape recorder, only to find out he just gave me a huge, ugly, black, old tape recorder with a huge mic and huge earphones. Imagine carrying that for a year and a half! Winding around Khayelitsha, everyone thinking I was going crazy!

This is Khayelitsha. This is outside Capetown, is that right?

Yes. It’s a township. It’s the biggest township in Capetown.

I recorded for a year and a half and it was difficult. I was not programmed to record anything. I just recorded and then Joe would cut and take what he wants and cut whatever he doesn’t want.

I was told to record important things like the highlights, like going to the clinic, disclosing to my father, taking treatment, having a discussion with Melikhaya, talking to my mother about how I came to decide to have a baby, and just my thoughts about the future and how I am handling being a mother and what do I wish for Onwabo in the future, and all that stuff. That’s what I actually recorded.

All of this was going on and you had told a lot of other people, but your Dad still didn’t know?

Yes. It was quite difficult. My Dad didn’t know, but before I could even finish the diary, the diary was going to be out. Any time soon, he was going to know. I was like, I’m going to do it. I’m going to go and disclose to him and it’s going to be on tape. I want people to actually see the reaction of how people really react when you disclose. Because either he’s going to accept me or he’s going to reject me. Whatever he does, it’s going to go on tape. People are going to see that.

Sometimes it’s not about disclosing. It’s about accepting yourself and being ready before you disclose, not making the mistake of, “I have HIV. I’m going to go and disclose just because Thembi did so.” You might lose a lot of things. For me, it was a matter of losing my Dad, but at the end of the day he’ll still be my Dad. He’s going to understand, rather than not doing what I actually want to do. It was either I’m going to lose him, but he’ll always be my Dad. At the end of the day he’s going to come around. Rather than me not doing what I feel is right for me. This is me I’m talking about. I have to put my feelings first.

I went and disclosed to him and it was all on tape. I was nervous. I went there three times and I didn’t do anything. But the fourth time, I was like, “You know what, I’m just going to go and do it.”

My mother was like, “You have to. If you really want to help people, you have to start within your family. Whatever the reaction, we are here to support you.”

I went and I disclosed to him and, if you could hear the radio, you could hear his speech on the radio. He was shocked. Because, at first, I just asked him, “What do you think about HIV/AIDS?” He could not even let me finish. He was like, “I get angry about this disease because you grow up [with] your kids now and tomorrow your kid is dead.”

He was so angry before I could even tell him. But when I actually told him, “Okay, I’m going to tell you. There’s no going back.”

He was shocked. He was like, “No, man, no, no, no. Really?!” I said, yes. I told him it’s been many years. Everyone else knew, but no one could have told him except for me. He was very supportive and we’re still close, although he is too much sometimes.

Why did you wait so long to tell him in particular?

I think because I grew up on both sides of the family, but I grew up mostly — in my teenage years, I was actually staying with my father and my grandmother. Imagine that, being a girl staying with your grandmother, with your grandfather, and your father. It was weird! I was staying with them in my teenage life and it was actually not comfortable. It was not a comfortable situation for me.

In order for me to have boyfriends, to go out and do all that crazy stuff that I did, was for me to go to my mother’s side. When I found out this whole thing about HIV, I actually was ashamed and I was scared to tell them. I had questions like, what the hell could I ask? You were living here. You mean you were living with another and you were having sex? You know, all those kinds of questions. You took it like a young girl and you were doing all this stuff. I thought that was what he was going to say. I thought, no, no, no, no, on my mother’s side it’s better because those are women; they understand. But for him, I didn’t think he was going to understand.

How is all of your family at this point? You talked about Melikhaya’s family at first being really upset. Do you feel like you have your family’s support?

I have 100% of my family’s support. My grandmother, my mother, my crazy brothers, my crazy sisters. I have Onwabo. I have everyone. I still have my grandmother. My grandfather is very, very old. He’s 92. He’s too old. I still have him. I’m blessed. I have my family very tight together.

What do you think gives you the courage to speak out when so many people don’t?

I think it’s because it helps me. I think I saw the impact it has on me. That’s why I think it’s like this every time I talk. I get healed. Because every time I talk about it, it feels like a new wound. I speak about it all the time, so I’m used to it. It’s like every time I start to talk about it, it feels like it’s a new wound. I’m opening up old sores. To talk, it heals me again. Every time I talk it heals me again and again. That’s the courage.

What’s it like being a positive Mom? Are you able to talk to your daughter at this point? She’s still very young, but —

She’s still very young, but I know that God is going to give me much more time, up until she gets a little bit bigger, so that I can explain everything. At this point, she’s young but she knows that I go and talk, but she actually doesn’t know what I’m talking about. But I have everything fixed up for her. I have the [inaudible] copies. I have all the work that I have done. I have pictures. I put them in a box.

When she’s old enough to understand and ready enough to see, whether I’m here or not, I know she’s going to be part of me. Everything is going to be fine.

What’s it like being out in your community? You’re sort of out to the whole universe. Do you experience stigma at all in the township where you live?

Yes. Stigma in every community is going to take a long time before we actually break the stigma, especially in Khayelitsha, because of how people’s minds act. People are still stereotyped. There are a lot of cultural beliefs and there are a lot of myths going around.

Sometimes there’s too much stigma and sometimes some people say I’m doing the right thing, and you get those people who are like, “What’s up with you going around talking about your status? It’s something confidential. You should hide it. You don’t have to tell the world about it.” Some people think I’m exploiting myself, something like that.

Other people are too jealous. I help people. I’ve had comments like, “You know what, even if you can go and tell the world, the fact is you’re going to die anyway.” It’s not going to go away just because you go and tell it, so you can enjoy it while it lasts. You get comments like that, but who cares? It’s not like everyone’s going to be here up until the universe explodes. We’re all going to die!

I can say I’m bulletproof. People say whatever they feel like saying. All I’m doing is focusing on what I’m doing. I don’t care about all the comments, whether they are good or whether they are bad. I do what I feel is right for me and now I have a responsibility. I have Onwabo. I can manage to [inaudible] and take everything seriously.

Can you tell me a little bit about your community and about the township, just about your home?

My home is in Khayelitsha. It’s a big township. All the houses are mostly in shacks, but thank God now the government has started to build up, so we have brick houses. My grandmother has a big brick house and my mother has a house. I stay with Melikhaya in our own house, but we are also in Khayelitsha. All of our family members are in Khayelitsha, but Khayelitsha is so big.

How many people live there?

I don’t know. A lot! [Laughs.] Imagine if you talk about shacks, you’re talking about three houses in a small spot. Imagine how many of those — there a lot of problems. The highest rate of people in Khayelitsha are mostly HIV-positive. I think that’s why the MSF [Médecins Sans Frontiéres] clinic is based there. That’s why the [inaudible] are all out of ARVs in Khayelitsha.

I’m sorry, can you describe that?

Khayelitsha is so big that most of the people in Khayelitsha are HIV-positive, so that’s why MSF is there. It was the first township to receive ARVs. They’re all out of ARVs. I was lucky to be in that township. Imagine if I was not living in Khayelitsha! I would have struggled like anyone else did.

I’m sorry, so it’s the MSF there? What is that?

It’s Doctors Without Borders.

In Khayelitsha, there’s pretty good antiretroviral access?

Yes. It’s pretty good. We get them for free and we get access to everything we need, and the medication, and you get it for free.

It’s not like that in the rest of the country?

No, it’s not like that in the rest of the country. There are parts of South Africa where you struggle to get ARVs, where there is no [inaudible] or where people have to walk miles to get them. They have no access at all or they have a limited access.

What treatment do you take now?

I am now on nevirapine, d4T (Zerit, stavudine), and 3TC (Epivir, lamivudine).

How has your health been since you started treatment?

Before I started, my CD4 count was 120. Now my CD4 count has gone up pretty much, although I still struggle to be back on my normal weight. My normal weight is 45kg [99 lbs], but now I’m only 43kg [95 lbs], so I’ve struggled. I’m not actually reaching that. I also don’t want to be fat, excuse me!

[Laughs.] You’re very tiny!

But, excuse me, I do not want to be fat! Imagine being tiny and short and being fat, it’s not good.

My weight is fine now and my health is good. The weirdest thing is that I’ve never had any — I’ve had opportunistic infections, like TB [tuberculosis]. I had it twice. I’ve never had an STD [sexually transmitted disease]; that is weird. The only thing that I had was TB. I had it twice and I treated it, so my health is fine. Onwabo’s health is fine. I take her to the doctor even if she has a runny nose because she likes to play outside! [Laughs.] Melikhaya is still doing well.

Melikhaya hasn’t started treatment yet?

No, he has not started. I think they’re going to start him, because his CD4 count is 500 and he has experienced pains in the chest, but it’s not TB. I think it has something to do with the heart or something. He’s still looking into it.

What’s your CD4 and viral load now?

My viral load now is undetectable. Imagine how many years I’ve been taking ARVs! My CD4 count is seven [hundred] something.

That’s fantastic!

From one to seven is [phew!].

What was your count when you were first diagnosed?

It was 167 when I was diagnosed and they said, “You should start ARVs.” I was like, no, no, no! All those stories. Then it dropped down to 120 and I’m like, okay! Please, please, please, please just give me this one chance. I’m going to do it right.

Switching gears a little bit, can you tell me how the audio journal has launched you into this world of international activism?

Man, it has done a lot! If I think back, doing that diary made me sick most of the time. I was like, I don’t want to do this. I don’t want to spend my whole year recording something about AIDS. What are people going to say about me? This is crazy!

But now, it has formed me into a very mature woman, and responsible. It has shown me the world. It has really made me — even if I was going to lose hope, now I can never lose hope because I’ve got all these people looking up to me. That gives me the strength.

It’s all because of the diary. That’s the only reason I’m here. It’s because of the diary. Every time I see Joe Richman, I’m like, thank God you came to Khayelitsha and found me in those [inaudible] Who knows? I might be dead by now.

So your life has changed a lot! You’ve been a UNICEF ambassador; you won an award for your audio journal. What is this new life like?

It’s nice, although I have to talk about the same thing. [Laughs.] It’s nice, but the [bad] part is that I have to talk about the same thing. For me, every time I start to talk — I don’t talk to one people, I talk to different audiences. It’s a different vibe and every time I talk, I talk about it. It comes fresh.

I know that I’m doing a good thing. I know that. People appreciate what I’m doing and even if I don’t help — I’m not going to save the world — but at least there’s going to be just that one person that is going to take something back.

It’s a really nice world. It’s fine when you are here, but when you go back to Khayelitsha, it’s the same old thing! It’s the same old thing.

How do you think HIV has changed you?

It has changed me for the better, because I think if I really didn’t have the test, I wouldn’t be who I am today. I would still be the ignorant whoever I was, whatever I was then. I would still think low of people that have HIV. I wouldn’t be involved in any HIV work. Imagine! Imagine not knowing your status and being involved in HIV work, that’s crazy! [inaudible] I would be one of those people who say, “Oh, well, it can never happen to me. It’s not like I’m sleeping around.” I use a condom once, sometimes, it’s not like, you know, you know what I mean, I would be one of those people, I wouldn’t take anything seriously. It has transformed me into this place, and that is actual. I’m taking things more seriously and it has made me grow so quickly.

Just one more question. You’re here in Mexico City. What is your biggest goal for the conference?

My biggest goal for the conference. Really, I have so much for the conference, but what I can say is the role that I want to play the most in the conference is the role of talking more to people about stigma. Because we understand that, actually, stigma drives HIV. We can talk about HIV prevention and whatever, and a cure and whatever, using condoms, but you don’t actually target the stigma.

Since I have a personal experience and I know that, because of stigma, these things are happening. Because of stigma, these things will still happen. I know that this is not going to take one day to actually go through peoples’ minds, because HIV is a very difficult subject. Every time we talk about it, it feels new. Every time we talk about it, it feels harder and harder and harder. You hear about it everywhere, but once a person starts to talk, you go back and then you feel like there’s a lot that still needs to be done.

I’m also here to put my input. Just working together, trying to find solutions, especially for us young people, because I think it relies on us. I think it is in our hands, but we don’t see it. Something like that. I think it relies on us, but we actually don’t see it or we don’t want to see it. It’s still going on.

Thembi, thank you so much for talking with me. Is there anything else you want to share with our readers?

I think that, as people, we should actually acknowledge that HIV is here and we need to do something about it. We should stop blaming people and blaming each other. We should work around it. Work around the stigma and discrimination, work around everything that’s surrounding it. Because at the end of the day, the children are going to suffer and we are also going to suffer. Since I’m a mother, I really don’t want Onwabo to grow up in a world like this. I really don’t want her, in the future, sitting like this and thinking, “Oh my God, I tested HIV-positive.” I mean, come on! As if we didn’t have the courage to do anything about it. We do have it! It’s just that we don’t want to or we don’t see it, I don’t know. But it’s up to an individual. You have to push yourself.

Thank you.

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Conversations With a Cab Driver; An “Edgy” Conference Atmosphere

Posted by pozlife on September 26, 2008

Day 3: Monday

Heidi Nass

Heidi Nass

Mexico City is a place of complicated and myriad modes of transportation. The way taxis work here is that they are stationed in various places around the city. This means that the same five guys are waiting outside our hotel every morning.

We’ve been getting a lovely gentleman named Ernesto who, it turns out, has English skills about on par with my Spanish skills. We’ve joked, in our broken sentences and wrong verb tense and wildly limited vocabularies, that we are having our own little language lessons every morning. We gently correct each other and generously make valiant guesses about what each other is trying to say.

Ernesto saw my conference bag and asked if I worked in HIV, which got us talking about the epidemic. There is a chance I completely missed what he said, but I’m pretty sure it was that he thinks the problem is that people think AIDS is over. They don’t really talk about it or even think about it. He thinks there should be more in the media.

Of course, I agreed. I said I thought that the silence allows people to remain ignorant and in denial that AIDS is all around us. Ernesto agreed.

The conference is intense. People say that every international AIDS conference has a “feel.” I would describe this one as edgy. These are not hopeful times in the world of HIV/AIDS — vaccine efforts are back to the starting gate, for every two people who start antiretrovirals (ARVs) three people are newly infected, the target to provide universal treatment by 2010 will not be met and the goal to reverse the epidemic by 2015 is all but out of reach. These dire realities have a way of permeating the air.

There are pieces of good news, like the fact that fewer people are dying of AIDS for the first time. It’s good news on its face, needless to say, but it feels a little like the emperor’s new clothes. People feign encouragement but it feels like underneath we all know a number like that is fragile and may well be temporary, given that we have no handle on this thing.

The number of people getting access to treatment is lagging behind the number of people newly infected. This has created some dissention among global advocates, researchers, policymakers and activists. Some feel that the investment in treatment is not paying off and that more money should be put toward the highest goal, a cure. Others feel that the development of health systems infrastructure and the management of other life-threatening diseases are being sacrificed to the investment in HIV treatment.

Every activist I know feels that these are false enemies. It’s not hard to see the investments made in HIV/AIDS treatment as a means to raise all boats. Successful AIDS strategies will require better health care structures and management tools for diseases like TB and malaria, so there is great danger in pitting one against the other, especially when they often affect the same people.

To use a George W. Bush expression, we need to make the pie higher. We don’t need to cast off one strategy for another — we need them all and we need them fast.

There’s been a fair amount of focus on criminalization issues at this meeting. Eighty-six countries consider sexual activity between men illegal, for starters. Regardless of where one stands on homosexuality, it’s hard to protect the public health if the very people you need to reach are underground and completely closeted because their life is illegal.

I could go on about the criminalization of HIV all over the world (including several states in the U.S., land of the free) but it’s late and I’m not up to describing in detail the reality that there are many places around the globe that are not safe for me to be or go, based on my HIV status… even if the virus is completely suppressed by medication and can only be transmitted through extremely intimate routes.

Some big news of the conference is that the Centers for Disease Control announced here that HIV infection rates in the U.S. are 40% higher than what they’ve estimated for many years. The newly released rate is 56,300 new infections a year.

The CDC says it’s all about new detection methods that distinguish new infections from ones that are newly diagnosed but perhaps long-term infections. It feels a little like a sleight-of-hand game, in which we’re supposed to be so glad they now have this new assay and these more reliable numbers that we don’t notice the rising infection rate, the need for a radical re-tooling of prevention efforts, and the absence of a national AIDS strategy — something we ask other countries to do if they get funding through the President’s Plan for AIDS Relief (PEPFAR) but don’t do ourselves.

One scandal in this story is that the CDC has sat on these numbers for months. It’s an outrageous situation that has clearly irritated some of the global partners. UN officials, for example, have not minced words about their shock and dismay at the lack of leadership and responsibility by the U.S. It doesn’t help that the U.S. was one of 40 countries that failed to report to UNAIDS on its response to AIDS at home and has systematically reduced funding to fight domestic HIV/AIDS over the last several years.

The backdrop of this scandal is a recently released report by the Black AIDS Institute [Left Behind! Black Americans: A Neglected Priority in the Global AIDS Epidemic]. It’s a blistering indictment of the U.S. HIV/AIDS efforts and highlights, among other sobering facts, that more black Americans have HIV than the total HIV-positive populations in seven of the 15 countries that get funding from PEPFAR.

All in all, we’ve got ourselves one fine — and tragic — mess.

To contact Heidi, please e-mail hmn@medicine.wisc.edu.

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Will Renewed Interest in U.S. HIV/AIDS Inspire Action?

Posted by pozlife on September 25, 2008

An analysis of increased attention from politicians on domestic HIV/AIDS was published by the National Journal
on September 20. The weekly political magazine covered the heightened
interest following the release of a Centers for Disease Control and
Prevention (CDC) report placing U.S. HIV incidence 40 percent higher
than previously estimated.

After the new CDC data was released
in early August, Sens. Barack Obama and John McCain each issued
statements on the findings, pledging to bolster efforts to treat and
prevent domestic HIV/AIDS if elected president.

The Journal
reports, however, that it remains unclear whether this renewed interest
in HIV/AIDS in the United States will inspire action. While the CDC
laid some groundwork for a national AIDS strategy in 2001—which
aimed to reduce the number of new HIV infections by 50 percent in four
years—it was never fully implemented. The agency has since
extended that initial plan through 2010, with a focus on better
addressing infection among African Americans and men who have sex with
men.

According to advocates, such as HIV/AIDS consultant Chris
Collins, one of the main barriers to implementing a national AIDS
strategy has been the lack of effective communication between local and
federal initiatives.

“We’ve got disparate efforts
scattered around the country and no one in charge of bringing the
various efforts together,” Collins told the Journal.

Search: CDC, Barack Obama, John McCain, national AIDS strategy

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The South Shall Rise Again

Posted by pozlife on September 19, 2008

by Jimmie Briggs

In the two years since POZ last charted AIDS in its new U.S. epicenter—the South—infection rates have continued to rise in the region. In 2005, the South accounted for 41 percent of people with HIV in the nation; today, it’s home to 45 percent of new AIDS cases. The regional epidemic is further complicated by the lingering effects of Hurricane Katrina and an unnatural disaster: poor federal AIDS funding.

When POZ last toured the American South, in 2005, the region accounted for 41 percent of all HIV infections in the U.S. Dozens of prevention workers, educators and people living with AIDS in the 16-state region (which includes Washingon DC) told us then that they felt that federal health officials had given up on the area—even though it had emerged as the epicenter of the epidemic in the U.S. “We’ve got to figure out how to level the playing field [in the South], or we’re always going to be struggling,” Kathie Hiers, the head of AIDS Alabama, said at the time. “The status quo is going to kill Southerners.”

Two years later, Hiers’s words ring all the more true. According to the Centers for Disease Control (CDC), the South now accounts for 45 percent of all new U.S. HIV infections—and 50 percent of all American AIDS deaths. The causes for the region’s spike in new infections are as varied and contentious as they were in 2005: extreme poverty, wobbly AIDS-service infrastructure, comparatively low federal funding (northern and western metropolitan areas are still granted the vast majority of federal AIDS dollars), a high minority concentration (which has traditionally eluded HIV-prevention efforts) and a large rural population (which has difficulty accessing basic care and services).

Yet the mere act of labeling Southern AIDS a “regional problem” perpetuates the cultural stigma and interstate funding fights activists hope to prevent. The South, with its many economic and social constituencies, cannot be pigeonholed as one drawling, down-home backwater. Though the region, with its rich history and traditions, can seem more American than America itself, it has often been portrayed as a world apart, a secessionist image it has even strived to cultivate. And so the South can seem familiar and foreign—especially with an AIDS rate that rivals that of some African countries’.

How appropriate, then, that many Southern activists look at the exploding crisis and say, “How can this be America?” Activists like Hiers are still hard on the case, helping the nation understand why the Southern HIV rate continues to rise—and to keep it from emulating that of South Africa.

John Paul Womble, director of development of the Alliance of AIDS Services Carolina—who has himself been HIV positive for 15 years—says, “I beg of you, please, please, please don’t toss everyone down here together in one lump. Georgia is different from Florida; Atlanta is different from Miami. And please don’t describe our struggle down here as wanting to take federal money away from people who need it anywhere in this country. I am a child of the South, born in Kentucky, but when I fight for my people here, I also fight for people everywhere. Every sick person in this country deserves basic care. I am fighting for a bigger pie for everyone, not for someone else’s piece.”

In POZ’s July 2005 “Southern Discomfort,” by Kai Wright, activists said that they hoped something, anything, could clearly illustrate the South’s plight to federal officials, some sort of defining event or image to better plead their case. And then, just two months after we published our story, a nightmare illustration arrived: Hurricane Katrina. The slow, skittish federal response to that disaster echoed the slow, skittish federal response to AIDS in the South. As New Orleans began to drown, it was cordoned off and given up for lost, its citizens sequestered in a faceless mass. “And that’s how we feel down here fighting AIDS,” says Womble, whose father died of AIDS. “It’s like we’ve been roped away from the rest of the country and been abandoned. As if the government looks at us and says, ‘Tough noogies.’”

Today, Hiers says, the South’s post-Katrina frustration perfectly captures the divide between U.S. urban and rural areas, even within the South itself. “We found an HIV-positive man in New Orleans who was trapped on his roof for two days as the waters rose,” she says. “We got him out, relocated him to Alabama, got him an apartment, clothes, meds, new furniture. And yet he was still extremely upset because he was used to getting free hot delivered meals in New Orleans before the storm. And in Alabama, we have never had the money or programs to deliver that. And what am I supposed to say to him? That he has no right to be upset? That he should be grateful for what we did get him? That if he isn’t happy here, maybe he should make his way to San Francisco or Chicago, big cities with lots of fed money?”

Evelyn Scott is another frustrated person feeling the pinch of trying to survive with HIV in the South. She’s tired of waiting for help. Born in Ridgeland, South Carolina, she now lives 30 minutes away in Beaufort, after spending time in New York City and Delaware. Positive for 18 years, she lives alone and survives on her monthly Social Security check. She’d worked for a while as a hotel night auditor in the state’s Hilton Head island resort. When she can, Scott, 47, volunteers with ACCESS Network, a local HIV and AIDS advocacy group. She’s a client but also a sometime peer advocate.

“The big cities, they have all the AIDS services,” she complains. “They have support groups, transportation, activities. [But] down here, it’s still the same attitude as when the disease first came out. People don’t get the services they deserve, and a lot of people down here are scared that if they say anything [about having HIV], they’ll lose their job, or if they access help or care people won’t talk to them anymore. Beaufort is a little built up, but it’s still backwoods.”

Scott is not alone in her call for help. Scores of people with HIV, community-based organizations, foundations, public health officials and, slowly, faith-based groups are raising a louder call for greater awareness and support in the South. Even before AIDS arrived, in 1981, the region had long been home to the 10 American cities with the highest rates of sexually transmitted infections. But now, not only are seven of the 10 states with the highest AIDS rates in the South, but more survivors of the disease live in Southern states than anywhere else in the country. To tackle the disease in such diverse states as Mississippi, North Carolina or Louisiana means understanding the complex array of factors contributing to its spread and responding with cultural sensitivity and accuracy.

“The spread of AIDS has transformed since the beginning of the epidemic,” explains Professor Charles van der Horst, MD, of the University of North Carolina, Chapel Hill. Having researched the transmission and impact of the disease since 1981, Van der Horst was part of the medical team that identified a cluster of infections among predominantly African-American colleges and universities in the late ’90s. “The fact that 50 percent of new AIDS cases are in the Southeast shouldn’t be a surprise to anyone, because that’s where the majority of STDs are found, as well as poverty.” Indeed, the average annual income of an HIV-positive person in Alabama is $7,900. “Crushing poverty and malnutrition make it hard to attack the epidemic in South Africa,” Van der Horst continues, “but those are also factors in our areas, too. We’re dealing with poor people who don’t perceive themselves at risk, people who are addicted to drugs that make them take chances, and a lack of comprehensive sex education.”

North Carolina has concentrated medical resources and personnel in larger cities, despite the fact that close to 40 percent of its population live in rural areas. That scenario is mirrored in South Carolina, Kentucky, West Virginia, Mississippi and many other Southern states.

Womble says that in 2007, many of the long-cited causes of the Southern HIV-infection disparity are often used merely as excuses to justify a federal monetary response that has not been tailored to the evolving epidemic. “This business that the South is just reeking with stigma and ignorance is  insulting,” he explains. “Look, I am a gay man, and when I was working in AIDS services on the South Side of Chicago, I myself was incredibly stigmatized because I am white and gay. There is stigma everywhere, not just the South. The truth is, with the Ryan White CARE Act money, the federal response correctly began with the areas that needed it most—large urban areas. But when the infrastructure that was built [no longer served the need of the people in the same way], the government didn’t want to change it, because they created it, and it worked. It’s easier to maintain the status quo than to change.” Womble says that just the other day, an HIV-positive woman from Connecticut called him and asked for advice on relocating to North Carolina so she could live closer to her son, who attends college there. “I said, ‘You really want my advice? Don’t come. You’ll get better services in Connecticut.’”

The regional crisis of HIV and AIDS in the South did not happen suddenly. Increases in infection rates and morbidity were recognized as early as the mid-’80s, and the large metropolitan areas where the disease originated drew media, federal attention and money. A turning point may have been a three-day event held in Charlotte, North Carolina, in November 2002.

Titled “A Southern States Summit on HIV/AIDS and STDs: A Call to Action,” the gathering was organized by the Kaiser Family Foundation, the Southern State AIDS/STD Directors Work Group and the National Alliance of State and Territorial AIDS Directors (NASTAD). It drew state public health
officials, legislators, directors of AIDS service organizations (ASOs) and advocacy groups. The occasion not only provided badly needed camaraderie and recognition for individuals battling deeply entrenched conservatism and denial, but also produced the “Southern States Manifesto.” In addition to outlining steps for moving forward in all response and advocacy areas, the manifesto noted the particular regional issues that public health authorities faced in the South.

“We’re somewhat behind the rest of the nation in coming to grips with the social aspects of HIV and AIDS, but the facts are well-known,” observes Craig W. Thompson, director of the STD/HIV Bureau in the Mississippi State Department of Health, a position he’s held for 18 years. “There have been gradual, productive efforts to increase the awareness of HIV/AIDS in the community, but it is somewhat difficult because of the religious climate. But the reality is less about North and South, and more accurately, urban versus rural. Access to care can be a problem for the underinsured and uninsured anyway, so when you add all the other baggage that comes with HIV disease, it becomes a task. We’re doing well in Mississippi just to get people into care and on medication.”

Last July, Thompson’s division pledged $200,000 annually for the next four years to support a pilot project funded by Housing Opportunities for Persons With AIDS [HOPWA]. It will create long-term, low-threshold supportive housing for HIV-positive Mississippians. The state has never before spent money on long-term housing for people with HIV/AIDS.

The Southern AIDS Coalition, meanwhile, to which Hiers and Womble belong, includes public and non-governmental health officials from 14 states in the South, plus Washington, DC. “We are making progress by finally uniting,” Hiers says. “But even from our own board [we see that], different states can have different agendas. The key is to resolve those so we can better demand what we need as a group.”

Debra Roth, director of communications and marketing strategy for the National AIDS Fund, says, “Leading private philanthropic organizations like the National AIDS Fund, in partnership with the Ford Foundation and the Elton John AIDS Foundation, have made the South a priority for their HIV/AIDS funding, with aspecific focus on building community capacity and leadership.” The national fund has been supported by the Ford Foundation to provide $1.8 million in “Southern REACH” grants to nine states in the South. Additionally, the group’s Gulf Coast HIV/AIDS Relief Fund will disburse $750,000 to alleviate the lingering impact of Hurricane Katrina on the organizations working to support those with HIV/AIDS in Southern states. “We are optimistic that by involving a broad cross section of sectors, including not just AIDS-specific organizations but other health and social service organizations, community groups, faith-based organizations, local philanthropy, business leaders and others, we can create the kind of comprehensive leadership and responses that are needed,” Roth says.

According to the Kaiser Foundation and CDC, more than 21,000 people with HIV and AIDS were directly affected by Hurricane Katrina in the hardest-hit states, Louisiana, Mississippi and Alabama. A larger metropolitan area with a high number of AIDS cases, New Orleans continues to struggle. Half the community-based prevention contractors went out of business, and a significant percentage of patients never returned after the storm, or returned months later to find their medical coverage was lost or in disarray.

“Right after the hurricane, [we] reached out to everyone in our network to try and raise whatever money we could to help affected organizations,” points out Michael Rhein, director of programs and resource development for the National AIDS Fund. “In trying to help those displaced by Katrina, the Ford Foundation wanted to invest in the South and Gulf coast area, so they gave us $500,000 last fall. By December we’d made that amount of money in grants.”

Michael Hickerson leads one of the agencies working on HIV/AIDS in New Orleans. Based in the Treme neighborhood, one of the oldest African-American enclaves in America, In This Together is an AIDS service organization and the first Title I group to work in the city. Hickerson and his partner, David Munroe, started In This Together after years of volunteer and professional work in the field. The problem was that they started it two months before Katrina hit the Gulf Coast on August 29, 2005. Evacuating to Baton Rouge and returning sporadically to their flooded house and neighborhood, they reopened the organization’s doors within a month after the storm.

The city of New Orleans ranks seventh for HIV/AIDS cases in the United States, and Hickerson’s neighborhood ranks first in case rates among all of the city’s neighborhoods.

“Personally, I continue to be pessimistic about the response to HIV and AIDS across the Southern states,” Hickerson notes. “Very little advocacy has been done among and within the community. Elected and religious leaders continue to dance around the issue. So as a result, more people are continuing to be infected. Look at New Orleans and the difficulty in getting resources onto the street. Is that any reason for optimism? ”

Jessica Mardis, 31, could use a few of the Ford Foundation’s $500,000. HIV positive for nearly half of her life, she’s an 11th-grade dropout—and now a single mother of Gabriel, 4. Her hometown, Gulfport, Mississippi, near the coast of the Gulf of Mexico, was ravaged by Katrina. While still struggling to rebuild her life, she works as a staffer for AIDS Action Mississippi, a division of Housing Works.

Two years ago, Mardis’s fiancé, John, died of AIDS. Three years ago, her mother committed suicide. Until John’s death, she says, she hadn’t taken care of herself—using drugs and alcohol and unsuccessfully trying to live in denial about her physical condition.

“Until [my husband] passed, I was never comfortable with my status,” observes Mardis one late-summer evening after putting Gabriel to bed. “Before he died, I had a few friends that knew I was positive but not many people.

Afterwards, the word spread like wildfire. I was surprised at the helpful reaction. I look around down here, and people are being infected every day. Now we’re trying to put our faces out there to show people that not only is this disease real, but you need to stand up for yourself.”

Mardis says that includes standing up for funding and care. According to recent statistics, every AIDS case receives nearly $500 less in federal aid in the South than the rest of the country and $200 less in federal appropriation for HIV prevention per estimated AIDS case.

“Our funding tends to be historically based, and historically more money tends to go to the Northeast and the West,” notes Dr. Robert Janssen, MD, director of HIV/AIDS Prevention at the Centers for Disease Control. “Those are the areas where the epidemic started. [In 2007] we got $35 million in new money going to health departments. We haven’t looked yet at the distribution because final decisions haven’t been made, but based on state eligibility, a lot of that money is going to the South. As we look at the work we’re doing, we anticipate making our funding distribution across the states more equitable. The shift toward equitability is more recent than the shift of the disease.”

While there is certainly reason for pessimism and disappointment with state and federal responses to HIV/AIDS in the South, there have been notable successes and lessons learned, which could be applied throughout the country. Andrew Spieldenner, director of programs at the National Association of People With AIDS (NAPWA), notes that “many of the Southern states have taken creative steps in meeting the needs of people living with HIV in their jurisdictions, including those with health departments, elected officials, faith-based groups and other businesses servicing the same populations. Some of this has been necessary in order to maximize resources; some of it has come out of extensive relations already existing in the respective communities.”

Given the extraordinarily high percentage of churches, particularly black churches, in the South, it may be reasonable to expect more leadership and advocacy from the faith-based community. Still, the church as an institution is doing much to ramp up its response. At the forefront of the effort to recruit more faith-based support is The Balm In Gilead, a non-governmental organization led for the past 18 years by Pernessa Seele, a native South Carolinian who relocated the group from its New York headquarters to Richmond, Virginia, last year. As POZ went to press, The Balm In Gilead was planning to sponsor the National HIV/AIDS Conference for Black Churches in Hilton Head, South Carolina, in October 2007.

“There is a dire lack of information around the disease in the South, which so resembles Africa,” Seele observes. “Information does not come through the South. Most urban centers are the centers of information. Atlanta is the South, but it’s Atlanta. If you happen to live way across Georgia you might not get the right information. Now, we have churches who are on board, but far too many have their heads in the sand. We’re seeing a change in churches’ response to AIDS in urban centers but not rural areas. That’s why we moved The Balm to Richmond.”

Seele argues, “I can’t get people interested in doing something exciting around the disease—outreach, advocacy, testing, etc.—[in cities like] Richmond. Let’s not do Miami but rather organize in Plant City, Florida. We punish the people who don’t have all the information in the South, in rural areas, because they don’t know about the disease. Economics drives the conversations. We find people down here in rural areas who believe AIDS is from mosquitoes. You don’t have to go to Africa to find that thinking. Though we moved our organization down South, we’re still using the same methods for reaching churches and parishioners.”

One organization critical to fighting HIV has long been headquartered in the South: the CDC. Based in Atlanta, it may appear to have the advantage of proximity in trying to combat the area’s AIDS crisis. And Kevin Fenton, who directs its National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, has said that he intends to make the contributing social causes of HIV—poverty, lack of education, poor testing efforts, late diagnoses—a priority. But Hiers says that the “CDC and Ryan

White folks in Washington need to work together, to get their act together. Yes, the CDC is right there in Atlanta, but it’s really in an ivory tower, removed from the reality [of the South].” She adds that the Feds tend to point to all the wrong markers when explaining their response. “I get a bit frustrated when I hear that we should be encouraged because state ADAP [AIDS Drug Assistance Program] waiting lists are low. That’s misleading. Just because people aren’t on a waiting list for meds doesn’t mean they aren’t positive and don’t need meds desperately. They just haven’t applied for them, or they don’t know their status, or they have no way to access care because they don’t have a car or child care and they live far from a clinic so they think, ‘What’s the use?’”

Adds Womble: “With the medicalization of the Ryan White monies, focusing only on services and care that can be shown to reduce viral load and increase T cells, we lose out too—the supplementary services like transportation vanish. If you live in a city like Chicago, you can hop on the el to see your doctor. But if you live in rural North Carolina, and don’t own a car, like my people, you’re screwed.”

Hiers and Womble say that before progress can be made in their homelands, it is essential that the South not be punished or blamed for its own tragedy. “It’s not that we’re doing something wrong down here,” Womble says. “It’s not because we’re odd or socially retarded. We are who we are.” And until the Southern AIDS crisis is seen as an irreducible arm of the American AIDS crisis, he says, “it’s gonna be tough noogies for everyone.”

Correction: The National AIDS Fund has been supported by the Ford Foundation and the Elton John AIDS Foundation– with grants of $1.55 million from the Ford Foundation and $250,000 from the Elton John AIDS Foundation–to provide a total of $1.8 million in “Southern REACH” grants to nine states in the South.

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The South Rises Again

Posted by pozlife on September 19, 2008

by David Evans

The Southern AIDS Coalition (SAC) issued an update to its 2002 Southern States Manifesto, highlighting both the encouraging progress made against the HIV epidemic in the South and the daunting work that remains to be done. SAC co-chairperson Kathie Hiers shares with POZ her dream that activists will unite next year to help heal a part of the country most severely ravaged by the epidemic.

Hurricane Katrina, and its aftermath, has become a resounding metaphor for the deficiencies of the federal government in the American South. Just as the murky storm waters burst through a decrepit levee system soon after the hurricane had passed and the all clear had been sounded, HIV has broken through a neglected public health infrastructure in most Southern states.

The South, both urban and rural, has 177,613 people diagnosed and living with AIDS, more than any other part of the country. The epidemic also appears to be growing faster in the South than anywhere else. Just as Katrina hit African Americans harder, so too has HIV in the South. Despite the disproportionate impact of HIV, however, the South only recently began receiving the same level of funding for direct HIV care as the rest of the country, and still trails behind in terms of money for HIV prevention, housing and substance abuse treatment.

In 2002, the Southern AIDS Coalition (SAC)—an alliance of public health officials, AIDS service organizations and activists—sounded the alarm, publishing its Southern States Manifesto. “The original manifesto was…an attempt to focus the media, policy makers and funders on the massive problems that the South has with HIV disease,” says Kathie Hiers, the chief executive officer of AIDS Alabama and the current co-chair of SAC.

The SAC issued an update to the manifesto last week, documenting lessons learned and progress made since 2002. According to Hiers, SAC “also wanted to highlight that the work is far from done and that the numbers, as far as the epidemic goes, are just getting worse in the South.”

While Hiers concedes that SAC is not yet ready to make specific recommendations for the remaining funding inequities, the timing of the update is not a coincidence. The Ryan White CARE Act, the largest funder of HIV care in the United States after Medicaid, is up for renegotiation next year. Significant changes could also occur in the administration and Congress, which could in turn open the possibility for increases in prevention, housing and substance abuse funding. “I’m not going to shut up until everybody in America who is HIV positive and low income can get [the same] standard of care services,” Hiers says.

Hiers and SAC will be fighting to reverse funding inequities between the South and the rest of the country, but they also want to reverse inequities that exist within the South, often between the largest cities and more rural areas. Hiers says Katrina made that kind of inequity “painfully clear.”

“Where a person who’d been living in New Orleans before Katrina could get assistance with their medication co-pays up to $15,000 a year, when they moved 20 minutes down the road to Baton Rouge after Katrina, they could only get $1,500 a year,” Hiers says.

Last time the Ryan White programs were up for reauthorization by Congress, much was made of the fact that people with HIV in cities like New York and San Francisco could get massages and acupuncture, while people in South Carolina were literally dying because they were on waiting lists for the AIDS Drug Assistance Program (ADAP) in that state. Ryan White contributes to the state ADAP programs, which traditionally cover the cost of HIV medications for people who don’t have private or government insurance and can’t afford them. Individual states decide how much to chip in, who will qualify for the program and what drugs are covered.

Hiers doesn’t like how divisive discussions like this became in 2006, both among lawmakers and activists. “It is true that some cities could afford massage therapy and acupuncture and those kinds of things, and those aren’t bad things. They’re good things for HIV-positive people. But until we have some level of fairness across the board where at least everybody can get medicines and viral load testing and things they need to stay alive and stay healthy, then that is problematic for me,” she says.

Hiers favors a proposal that was floated and shot down in 2006 that would have taken ADAP from the states and made it a national program. Such a program, she says, would ensure that when people with HIV move from one state to another they could keep their benefits and receive the same standard of care.

The politics around that proposal in 2006 were complex and intense, but so too were the disagreements between the North and the South about how to split up a pot of money that wasn’t big enough for everyone to get exactly what they wanted. One of the biggest problems is that many Southern states have Medicaid programs that are far less generous than other areas of the country. This means that people with HIV in the South receive their care through Ryan White and ADAP when they would have qualified for Medicaid in other states; a fact that leaves AIDS activists in states like Mississippi and Oklahoma—which regularly score the worst of any states on health care in general—in a bind.

Hiers says, “My dream would be that the AIDS community can come together this time around rather than being so divided. I’m hoping that there are more coalition-building opportunities, because quite frankly Congress is sick of us, and they’re sick of our fighting, and they want us to come in there with a more cohesive position, and that’s not going to be easy.”

The update to the Manifesto also acknowledges that money isn’t the only solution to the problems the South faces with HIV. Two overwhelming complications are stigma and distrust of the health care sytem. Intense stigma around HIV pervades the South, particularly rural areas. The report says this is especially true for men who have sex with men (MSM) and African Americans, the two groups most brutally impacted by HIV in the South.

Aside from stigma, however, the long shadow of the Tuskegee syphilis study still looms large in the minds of the African-American community. The study ran from 1932 to 1972 in Tuskegee, Alabama, where 399 poor—and mostly illiterate—African-American sharecroppers were studied to observe the natural progression of syphilis if left untreated. The study ran, and the men remained untreated, for 25 years after it became standard of care to treat and cure syphilis with penicillin in 1947.

“There’s still a good bit of distrust among African Americans for the medical community, and I don’t blame them,” Hiers says. “Some horrific stuff has happened in the South in the past. But we’ve got to find a way to get past that and reach folks so that they can learn to take care of themselves.”

“We have one of the best clinics in the world in Birmingham, [Alabama],” continues Hiers, who adds, “And do you know that the [average] CD4 count upon initial diagnosis there is still under 200? The average CD4 count is around 160. We’re just getting people into care too late. We’ve got a lot of work to do down here in terms of education and outreach.”

Birmingham is also the city where Martin Luther King Jr. wrote his famous letter, a civil rights manifesto, while in jail for civil disobedience. The sentiments he expressed in that letter are echoed in Hiers’s and SAC’s dream of equal care for Southerners with HIV. King wrote: “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.”

Hiers hopes that the update to the Southern States Manifesto will inspire people to think like King, especially people living with HIV. She says, “No person’s voice is more important to me than the person living with HIV. And [SAC is] going to make sure that HIV-positive people have a voice in what we do, whether it’s policy making, or on our board, that’s a key principle for us. So if anyone is interested in joining, we’d love to have them.”

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Texas Hurricane Ike Information From DSHS HIV/STD Program Emergency HIV Prescription Information for Hurricane Evacuees

Posted by pozlife on September 19, 2008

September 16, 2008

The Federal Emergency Management Agency (FEMA) has activated a special Emergency Prescription Assistance Program (EPAP), available to evacuees in Texas counties listed on the following document: www.cms.hhs.gov/Emergency/Downloads/EPAP_PublicComm_Ike.pdf. The EPAP will provide a one-time 30-day supply of medications to treat acute conditions and replace maintenance prescription drugs or medical equipment lost as a direct result of Hurricane Ike. This special assistance is currently scheduled to be available between Sept. 12, 2008 and Sept. 22, 2008.

If you live in Texas, are already enrolled in the Texas HIV Medication Program (THMP), and have to leave your home due to an impending hurricane or subsequent flooding and storm damages, please call the program directly at either 512-533-3000 or 800-255-1090 to request a temporary pharmacy transfer. We’ll be able to set you up at an alternate pharmacy location in Texas to pick up your HIV medications while you’re displaced. If at all possible, please take your current supply of medications with you before you leave your home, so that you may continue to use that supply. The new pharmacy you’re assigned to will need as much information as possible from you regarding prescriptions in order to supply additional drugs to you, so the labels on your current prescription bottles and any other details regarding your physician will be a tremendous help to them. Remember, if you don’t have any additional refills available on the prescription you’re currently using, the pharmacy can’t fill your request unless they can reach your doctor’s office and obtain authorization to do so.

If you’re a Texas State Pharmacy Assistance Program (SPAP) enrollee using your Medicare Part D plan to obtain your HIV medications, please note that you may continue to fill your prescriptions from any participating pharmacy in the statewide SPAP network. (For example, any Albertsons, CVS, Kroger, Randalls, Target, Tom Thumb or Walgreens pharmacy in Texas can process the SPAP prescriptions.) A complete list of SPAP pharmacies is available at http://www.publichealthrx.com/pharm_tx_spap.html.

If you’re currently enrolled in an ADAP program in your home state and have been evacuated to Texas from a neighboring state due to a natural disaster or weather emergency, there’s a special Emergency Relief Application you can complete and fax into the THMP offices at 512-371-4670 along with proof of identity (such as a copy of your state ID or driver’s license) and a copy of your state ADAP ID card if available. Our staff will contact you at the phone number you provide and assign you to a Texas pharmacy location in order to pick up an initial 30-day supply of HIV medications while you’re temporarily in Texas awaiting the okay to return to your home state. The application you’ll need to complete can be downloaded at: www.dshs.state.tx.us/hivstd/meds/PDF/URGENT.pdf.

Anyone needing access to fax machines or local support services is encouraged to seek out assistance from local service providers. A listing of such organizations can be found on the Texas HIV/STD Service Directory page, located at www.dshs.state.tx.us/hivstd/services/service.shtm.

For those THMP clients who evacuated to Louisiana or other surrounding states due to Hurricane Ike and may be in need of medications, the aforementioned EPAP assistance should be available to you through Sept. 22, 2008. If you have any questions or concerns, or are unable to access medications through the EPAP, please contact the THMP directly, call the THMP office at 800-255-1090 or 512-533-3000 and ask to speak to Becky Ruiz (ext. 3006) or Katherine Wells (ext. 3008). When you call please have the following info available, if possible:

  1. Your name (or the client’s name), your previous address in Texas, and the pharmacy name and address you were assigned to in Texas.
  2. Your current address and a telephone number where you can be reached.
  3. The names of the medications you need to have refilled.

The THMP has developed a plan to use its mail order pharmacy, PMO (located in Shreveport , La.) to assist with dispensing medications to clients evacuated outside of Texas. Mail order transfers may take up to several days for clients to receive their medications if home delivery is required. Walk-up dispensing is available at the pharmacy in Shreveport but must be prearranged with the THMP. The PMO pharmacy is located at 2255 Woodward Avenue, Shreveport , LA 71103. Their toll free number is 1-800-429-0161.

Emergency medication dispensing is for one month’s supply of medication only. Clients evacuated outside of Texas for longer than one month and needing medication assistance should contact the ADAP office to discuss their situation and what other options may be available on a case-by-case basis.

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The Memory Of Ours

Posted by pozlife on September 19, 2008

"The Memory of Ours"<br>Rob Anderson

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