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I'm 13 and I have HIV: teens find life interrupted as they live with the disease that causes AIDS.


Ashleigh was 9 years old when she found out she had HIV.

She was sitting in her Colorado hospital room reading her Berenstain Bears book as the nurse shared the news. Her mom sat nearby, crying.

Neither knew that she would make it to age 13, but she did.

"I felt really scared," she says, remembering the day she was told her HIV status. "As I became older, I became less scared. I see another birthday pass and I'm still healthy. I'm still not as scared as I was the year before."

Ashleigh (not her real name) is one of tens of thousands of Black teens in America infected with the virus that causes AIDS--a number fast on the rise because Black teens are either born with the virus or get infected via having unprotected sex. In fact, Blacks ages 13 to 24 in 2006 accounted for about 60 percent of all new HIV/AIDS diagnoses, according to the Kaiser Family Foundation. Doctors say these numbers will rise as more teens get tested.

Ashleigh was born with HIV, making her different from other Black teens who acquired HIV through other means. Yet, the results are the same: None are expected to live long without their daily doses of medicine. They can pass the virus on to anyone with whom they have unprotected sex, and they can pass it to their children. If they ever get an opportunistic infection like, say, pneumonia, it could contribute to their death because their immune system is already compromised.


Ashleigh feared giving her actual name because being a 13-year-old student-athlete with HIV doesn't necessarily make you the popular girl in school. It also adds complications to an already complex teen life, she says.

Before she knew she had HIV, she never thought about dying. Now her mortality is paramount. She watches her weight. She takes her vitamins. She always washes her hands. And she doesn't tell anyone she has HIV.

She now understands the reasons for all those meds and shots and pokes and prods from doctors since kindergarten. When she thinks about the signs--having a "case manager," all those AIDS magnets on the fridge--she says she should've realized a lot earlier that something was wrong.

"Now I think back about all the clues I had [while] I was in my own little bubble," she says. "Just like, you know, nothing could ever happen to me."


Patricia, 35, is Ashleigh's morn. She's an accountant living near Denver (her name has also been changed to protect her identity). Patricia first had sex when she was 20. She immediately got pregnant and got tested for HIV. Her tests were negative until a year after the baby was born.

At that time, Patricia went to the doctor for a case of sinusitis and came out with HIV-positive status. She'd been breastfeeding her child for nine months at that point. The baby's father denied having the virus. He also refused to get tested.

"I was a good girl," Patricia laments. "They said, 'Your HIV test came back positive,' and I'm like, 'You're kidding me.' The nurse said, 'If [the baby] has it, she has four to five years to live. If you have it, you have eight to 10 years to live.'"

The doctor was wrong.

"What a heifer," says Patricia, remembering that day. "A few times a year I think about tracking down that doctor to say 'you're wrong.'"

They put the baby on medication that made her so ill that, as she got older, she decided to hide the medicine in various parts of the house. But at 8 years old, when Ashleigh's viral counts--an indicator of the aggressiveness of the disease--were getting dangerously high, Patricia decided it was time to tell her why she could never stop taking them.

Now Ashleigh takes medicine four times a day, every day, at the exact right time. She also learned a sad lesson about telling people of her status. When her fourth-grade teacher was diagnosed with cancer, in sympathy and camaraderie, she told the teacher that she had HIV. Then her friends started taunting her. Later on, Patricia got a nasty call from the school principal. The issue was squashed before it got out of hand, but that was the last time Ashleigh told her medical business to people at school.

Patricia also finally tracked down the source of her HIV infection: the father of her only child.

"I just found out about 12 months ago," she says, frustrated that its taken the man so long to check his own HIV status. It also changed the relationship between father and daughter. "A lot of the anger that [Ashleigh] initially felt toward me, she was really trying to figure out how to deal with it. Should she redirect anger to her dad since he's to blame? I think that knowledge really accelerated the need to get her in therapy. It's been long overdue and that's where we are right now."

Drug resistance is also an issue for Patricia and Ashleigh because the teen was born with a more virulent version of HIV than her mother's. That means that her virus could become drug-resistant.

"There are finite amounts of drugs available," says Patricia. "If I'm taking three drugs and I mess up and don't take the medicine on time, then my virus gets smart and learns to mutate around it. Then the drugs don't work anymore. And if" I pass it on to someone else, they get my drug-resistant virus."


Some doctors say teen HIV infection rates are on the rise due to a number of factors, including a rise in sexually risky behaviors, a lack of sex education in schools and the perception that people with HIV don't die anymore, so therefore AIDS must not be bad.

Additionally, changes in the way the government compiles statistics have led to higher HIV rates, says Cynthia Gomez, director of the Health Equity Initiative at San Francisco State University. For years, state governments were only required to list the numbers of new AIDS cases--not new HIV cases--says Gomez, who also is a trustee for the National MDS Fund. Starting in 2008, states began monitoring and recording new HIV cases, which means the numbers will definitely rise.

There were at least 56,300 new HIV infections in 2006. Of those new cases, 84 percent were African-American. And of the teens, 69 percent of those infected were Black, even though Black teens only comprise 16 percent of the teen population, according to the Kaiser Family Foundation. The majority of the teens living with the disease are in New York, Texas and Florida, according to the Centers For Disease Control (however, the District of Columbia and several states, including California, weren't included in the study).

Pop culture may share the blame as well, says Adedeji S. Adefuye, a doctor and director of the HIV/AIDS Research and Policy Institute at Chicago State University. Adefuye says culture supports the notion that a man is not a man unless he has several sex partners at a time. It also pressures girls into wanting to impress boys through sex.

"It's really a question of some of the values we hold," he adds. "If you're monogamous with your partner, it doesn't mean that he's monogamous."

At least one national survey backs that up, stating that 37 percent of sexually active Black high school boys have had at least four sex partners. Most of those boys also claimed to have used a condom, but only 12 percent had been tested for HIV.

Yet other teens say they are well aware of the dangers of HIV, AIDS and unprotected sex.

"It's a big deal," says Stacy, 18 [also not her real name], of Chicago, who was diagnosed with HIV last year after attempting to donate blood. "People my age know about it and are scared of it. Like, they know. They don't know that I have it, but we do talk about it."


Ashleigh may live up North, but the majority of new AIDS and HIV cases are in the South. In fact, there are so many new HIV infections among Black southerners that the rate of infections matches that of a small African nation, according to the Black AIDS Institute.

And yet, it's not that Blacks are more sexually active than Whites. It just means that more of us, in a smaller concentration, already have and could spread the virus. That makes it really important for everyone to practice safe sex--particularly the use of condoms during any type of sexual contact, whether oral, anal or vaginal. Doctors say that parents need to also talk with their girls about dating and having sex, in particular with older guys, who may deceive a younger mind into careless condom use.

Ashleigh isn't having sex yet, but her room isn't worried about her spreading AIDS to anybody else. Ashleigh, she says, is too responsible for that. Instead, she wants to protect Ashleigh from those nasty opportunistic infections. Doctors say that women aren't as likely to pass it to men; it is more likely that men infect women.

"What we try to instill in her is that sex is a beautiful thing," says Patricia, who relics on support from her local AIDS network and friends living with the virus. "It's meant to be a loving act, not what's portrayed in a lot of music today. We talk [about] keeping her safe because there's so much other stuff out there and her immune system can't take any other infections.

"I tell her, you missed out on the flee-love era. You gotta be sure of who you're messing with."

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* African-American young adults are disproportionately affected by HIV infection, making up nearly two in every three (60%) of HIV/AIDS diagnoses in 13- to 24-year-olds in 2006. For Black teens 13-19, the rate is even higher, 69%.

* Nearly half (48%) of all high school students in 2007 reported having had sexual intercourse, a decline from 54% in 1991. Males (50%) are slightly more likely than females (46%) to report having had sex.

* African-American high school students are more likely to have had intercourse (68%) than Whites (43%) or Latinos (51%).

* Overall, the median age at first intercourse is 16.9 years for boys and 17.4 years for girls.

* But Black boys start earlier, with 27% of African-American high school boys, 11% of Latino boys and 5% of White boys initiating sex before age 13.

* According to the Centers for Disease Control and Prevention, almost 46,000 young people, ages 13 to 24, were living with HIV in the United States in 2006. Nearly one in three (28%) of these HIV/AIDS cases among 13- to 24-year-olds were in women.

* Black women account for the majority of new AIDS cases among women (66% in 2006); White and Latina women account for 17% and 16% of new AIDS cases, respectively.

SOURCE: Kaiser Family Foundation
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Author:Samuels, Adrienne P.
Geographic Code:1USA
Date:Dec 1, 2008
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