Longer Life For HIV Kids, But What Future?

There's a new generation of HIV-positive children who are reaching their teen years, but one 14-year-old girl in Washington, D.C., is finding out that living longer with HIV comes with a price.

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LIANE HANSEN, host:

Tomorrow is the 28th Anniversary of World AIDS Day. For children born HIV positive on the first World AIDS Day, the odds were that they wouldn't live to see the 20th. In fact, a third of them died before reaching their second birthday. But in 1996, highly effective treatments were introduced. Now, a new generation of HIV-positive children are becoming teenagers. NPR's Ailsa Chang recently spent some time with a 14-year-old girl in Washington, D.C. who discovered that living longer with HIV comes with a price.

AILSA CHANG: When you first meet Deana(ph), she seems like a girl who wants to be different. She likes to shout out answers in class. She says she's not afraid to punch boys at school, and she loves to sing.

Ms. DEANA: (Singing) You can't running me, running me down. Tell me, telling me, wait. You are the one for me. Oh, boy.

CHANG: But she does try to hide one thing that makes her different. Deana has HIV. She's had it since she was born, but it wasn't discovered until she was six. And even then, no one told her she had it. She used to ask her Grandmother Theresa why she had to swallow a pill every day.

Ms. THERESA: I told her she had a blood problem. She used to have nose bleeds. And that was it, had to take a medicine.

CHANG: You believed that?

Ms. DEANA: No. I mean, I would see, like, my nose bleeds. But I couldn't believe that it was not clicking, like, it was not clicking because my nose was still bleeding when I was on the medicine. So it was not really clicking.

CHANG: It finally did click when she was almost 12. Deana, who asked that we only use middle names, was in her therapist's office with her grandmother for her weekly counseling session. Out of the blue, her therapist asked if she knew what HIV was and how people got it. When Deana asked why they were suddenly talking about HIV, her therapist and grandmother hesitated.

Ms. DEANA: They was like should - should you tell her and that like. Should I tell her or something like that.

CHANG: Her therapist spoke first. She said Deana's mom was HIV positive, and that's why Deana was, too.

Ms. DIANA: I just think it like, wow. Basically, I was thinking like, OK, well, it's just something else I just have deal with.

CHANG: Were you scared?

Ms. DEANA: No.

CHANG: Why not?

Ms. DEANA: Because I had lived that long. I could live longer. So, there was nothing to be scared of.

CHANG: When she talks about it, she has trouble making eye contact. Deana has never actually asked her doctor how long she'll live. And the truth is, no one knows for sure. Everyone born with HIV since the beginning of the epidemic is less than 30 years old.

Health experts say they could live a normal life span with today's therapies, but it's unknown what side effect a lifetime of those drugs will cause or whether the drugs can really put off full-blown AIDs forever. And so young people like Deana have to figure out just how to be a teenager while hiding a painful truth.

(Soundbite of shouting)

CHANG: Every Monday after school, a group of kids who share a secret like Deana's gather at a small house on a quiet residential street in Washington. The place is called Pediatric AIDS/HIV Care. But you see a totally different name on the front door.

Unidentified Woman: Hello, who's there?

CHANG: That's because the center wants to keep its mission private. Some of the kids here still haven't been told they're HIV positive or that their moms are, too.

Unidentified Woman: Just tell us something about yourself introducing yourself to each other. Maybe...

CHANG: Inside, the children make art and do homework. The older ones role play how to tell someone they're HIV positive before having sex. They plan for college, and they talk about how to look for jobs. Khadijah Tribble is the executive director.

Ms. KHADIJAH TRIBBLE (Executive Director, Pediatric AIDS/HIV Care): For many years, including our own organization, we hadn't prepared our kids to live. We prepared them to die because it was never assumed that young people would be living to 20 years old.

CHANG: But surviving into your teen years has a cost. It means living with a stigmatized disease at a time when acceptance is everything. Tribble says most of their kids learn they're HIV positive by the time they're 12 or 13. That's when many of them start thinking about sex and are old enough to understand what it means to have HIV. But Tribble says holding on to the information until the child is almost a teenager can be explosive.

Ms. TRIBBLE: All the things that a young person goes through are just hard in general. And then, when you throw this into a mix and someone doesn't have the support systems in place, denial will come up - anger, resentment, fear, shame.

CHANG: HIV may not have killed these kids, but it's marked them, even the ones who want to act tough about it like Deana, who's already had plenty of practice acting tough. She's got a dad who barely speaks to her and a mom who never raised her.

Ms. DEANA: So I don't really care about anything. Like some people say I dress weird. It doesn't really matter.

CHANG: It does matter. Deana has built her entire life around secrets, secrets that will make her seem more like everyone else. She fibs about the pills people see her take and the doctor's appointments that force her to miss class. And while her friends are thinking about sex, Deana says she'd rather stay a virgin. This afternoon, her doctor talked about safe sex, but safe sex means disclosure, and she has no room for that.

Ms. DEANA: Like the friends that I made, I tried not to get too close to them too quickly. I started testing people a lot more, like, just saying things that just was not true and seeing if they would spread or not, like just seeing if I could trust them.

CHANG: It's a hard way for anyone to pick friends, much less a freshman in high school. The good news is, fewer children now are born with Deana's burdens. The chance an HIV-positive mother will pass the virus on to her baby is now less than two percent thanks to improved treatments.

Deana was born just two years before those treatments became widely available. But she says she doesn't feel like a victim of bad timing. When you talk to her, she keeps bringing up her future. She says she's going to be a famous R&B singer one day.

Ms. DEANA: (Singing) I keep trying that you are the one for me. Yeah, boy.

CHANG: I told Khadijah Tribble about Deana. Here's a girl dreaming big when she doesn't even know how long she'll live or how many health problems she'll have. Would Tribble also tell the kids in her center to dream big like that? She looked right at me and said, absolutely. You live with urgency when you have HIV precisely because you don't know how long you have to live. Ailsa Chang, NPR News.

HANSEN: You're listening to NPR News.

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