Monday, April 7, 2003
Face of HIV gets younger as treatment gets better By ELIZABETH SIMPSON, The Virginian-Pilot
The Portsmouth girl was only 13 when she started having sex. She knew what AIDS was, and how you get it, but she was more worried about something else: getting pregnant.
In fact, it was a visit to the health department to get birth control injections in January 2002 that she discovered she had HIV, the virus that causes AIDS.
She couldn’t believe the disease she read about in health class and heard about on television and in movies was now a part of real life — hers.
‘‘I never thought it would happen to me,’’ said the girl, who is now 16. She’s part of an emerging category of youngsters: teens who are newly infected with HIV.
For years, pediatric infectious disease doctors dealt mainly with babies and toddlers who had been infected The number of teens treated for HIV at Children’s Hospital of The King’s Daughters in Norfolk is estimated to be at least double the number a decade ago.
with the virus prenatally by their mothers. Medical advancements that prevent prenatal transmission have virtually eliminated those cases. Those who are infected before birth reach their teens because of better treatment.
According to the Office of National AIDS policy, onefourth of all new HIV infections occur in people under 21. Many teens are getting HIV through risky behaviors, such as sex and drug use.
Dr. Randall Fisher, a pediatric infectious disease specialist at Children’s Hospital of The King’s Daughters, treats about 30 teens at CHKD, about 40 percent of whom acquired the disease as adolescents. He estimates the number of teens treated at CHKD is at least double the number a decade ago.
Unlike teens who were infected by their mother prenatally and have grown up with the virus, the newly infected teens have daunting issues dumped on them virtually overnight.
Do they tell anyone? How do they handle dating? How do they tackle the emotions clouding future relationships? And more immediately, how do they take on a life-saving medical regimen when they have the willpower of a teenager?
Sometimes it’s easier to pretend it doesn’t exist.
Teens also have characteristics that work against treatment. They lead chaotic lives. Shun authority. Keep secrets. Feel invincible. And wear defiance like a badge of courage.
That ‘‘you can’t tell me what to do’’ attitude can be deadly.
Fisher gives it to them straight. ‘‘I tell them, ‘You can either do what we tell you, or you’re going to die. Those are the choices.’ ’’
Take your meds, live; stop, die. Teens don’t always get that.
‘‘I don’t think they have the capacity to internalize something like that,’’ Fisher said. ‘‘It’s like they think bad things happen to other people, but they don’t happen to them.’’
It’s how they got here in the first place.
The medications that keep the virus at bay need to be taken every day, at the proper times. That can be a tall order for children who live ina state of denial.
Once they stop taking them, though, they lose effectiveness, and thena different medical regimen must begin. Once you burn through one set of medications, you can’t take that one again.
Eventually the virus will build up resistance to the medication, and a new set must be tried. And there’s only a limited number. The medicatio ns lengthen lives, but also have down sides. They can make teens skinny in the face and wide in places they don’t want to be. Fora teen who is despondent anyway, and who wants to fit in, it hardly seems worth taking them.
Teens who have had HIV since they were babies often have an infected parent who has died or been gravely ill, so they know what can happen if they don’t take their meds. But the newly infected don’t have that touchstone.
Some teens may not even know they have the virus. Years can pass before their viral loads are high enough to produce symptoms.
Dr. Bonnie Dattel, an obstetrician in the Division of Maternal-Fetal Medicine at Eastern Virginia Medical School, treats a couple of pregnant HIV teens a year. Usually they find out during prenatal testing.
‘‘That’s a lot to take on at once fora teen,’’ Dattel said.
Once in treatment, the teens respond well to medication. ‘‘We have taken it froma disease where kids are sick and in the hospital all the time toa disease they can manage on an outpatient basis,’’ Fisher said. ‘‘Most go years without needing hospitalization.’’
The 16-year-old Portsmouth girl credits Fisher with giving her the will to live.
‘‘He said, ‘Achieve your goals, go to school, and one day you’ll come back and thank me, because you’ll be old.’ ’’
When the girl first found out she had HIV in January of 2002, though, she wouldn’t leave home.
She quit going to school. Stopped socializing. She felt like everyone knew and was talking about her.
She finally told her best friend over the phone, who immediately met her midway between their homes to hug her.
Four months later, the same friend made her throw up after she tried to commit suicide by taking an overdose of medication.
She regrets much of her past: Hanging out in clubs. Having sexual relationships at a young age. Not listening to friends who tried to warn her that the man she had sex with had HIV.
‘‘I thought I could trust him,’’ she said. ‘‘I had a major crush on him. He was way older than me, and Iwas desperate for attention.’’
Another teen, a 17-year-old Norfolk boy, found out he had the virus this January. During the past year, he had been sick a lot, with fevers and white patches in his mouth, a condition called thrush. Tests revealed he had HIV, and probably had contracted it at least three years ago.
‘‘Every emotion came to me: anger, sadness, disappointment, scared,’’ he said.
Only his parents know, not his friends, not his girlfriend.
‘‘I don’t want to be treated different,’’ he said. He plans to tell his girlfriend he has HIV if they decide to marry.
‘‘Sometimes I get upset when I thinkI won’t be able to have kids.’’
In the meantime, he tries to live as normally as he can. ‘‘I really think about it like Idon’t have it.’’
The Portsmouth girl has tried to move on, too. She is back in school, and takes medications twice a day.
‘‘At first, my stomach hurt so bad all day long,’’ she remembers. ‘‘It made me real tired.’’
But the level of the virus in her body has gone down. She still has sex. She doesn’t tell her partners she has HIV, but insists they wear condoms.
Yet, she warns her best friend not to do what she has done. ‘‘She told me, ‘I’m gonna try,’ and I said, ‘Don’t try, do it.’ ’’ Keeping viral loads down is only part of the issue. The teens have to find their place in the world, too.
Children’s Hospital social workers Carol Adams and Ann Brown discuss issues of sexuality and disclosure with them, and repeatedly remind them of the dangers of passing the virus along.
‘‘Some pretend like they don’t have sex, and I’m thinking, ‘Yeah, like maybe not right this minute,’ ’’ Adams said.
She goes over all the dangers, all the recommended practices. If they have sex, they need to disclose they have HIV and use a condom. But condoms can break, so even that isa risk.
A realistic approach is needed, because many of these teens got here because of risky behavior, which doesn’t go away overnight.
Fisher suspects that improved treatments have given people of all ages a more cavalier attitude about the disease. Teens’ sense of invincibility and denial work against stopping the spread of the virus, too.
But these teens also could be powerful peer educators. ‘‘We can talk ourselves blue in the face, but we are not them,’’ Fisher said. ‘‘We do not understand them. We need to get teenagers to talk with teenagers, to say, ‘I’m one of you. You don’t think it could happen to you?’ ’’
It’s a message the 16-year-old Portsmouth girl is willing to give.
‘‘If I could take everything back, I would. I wouldn’t be out of control, wild.I wouldn’t have sex. I never thought it could happen to me. Don’t never say never because that’s what I said.’’