30th Anniversary of HIV
6:18 pm
Sun May 29, 2011

Growing Up With HIV

At age 21, Jeff has legs like broomsticks under his nylon basketball shorts and his cheeks are hollow. Sitting at a table outside the University of Miami Miller School of Medicine with two friends of about the same age, he looks young and fragile.

Credit digitalart / freedigitalphotos.net

Jeff doesn't like telling people what's wrong. He doesn't like what they say when they learn he was born HIV-positive.

"They say, 'Oh boy, you gonna die,' " says Jeff, who doesn't want his last name used. "They call it 'die-slow,' you got that 'die-slow.' "

Thirty years into the history of AIDS, a wave of children who were born with HIV -- kids like Jeff -- are coming of age. Mother-to-child transmission rates of HIV crested in the early 1990s. At the peak in 1991, 1,700 American children -- about 100 of them in Florida -- were born with the virus that causes AIDS.

GUIDELINES

The rates declined in the mid-'90s after a landmark study in 1994 showed that the drug AZT could prevent mother-to-child transmission. That led to guidelines for screening and treating pregnant women with the virus. Last year, there were only six infants diagnosed with HIV at birth in Florida.

Which, in many ways, means Jeff and his friends, who know each other from a support group for people born with HIV, are among the first and last of their kind. They compare growing up with HIV to being X-Men comic book characters -- outsiders.

"Sometimes it makes me feel like I wasn't part of the world," Jeff explains.

"Me too," says Nate Duclos, one of the three at the table and the only one comfortable with having his full name published because he has spoken publicly about growing up with HIV. "Like a mutant."

TOO MUCH TO CARRY

Jeff lives by himself in a second-floor studio apartment in Little Havana furnished with a bed and dresser with a matching mirror. He pays the rent with disability benefits. On the windowsill next to the bed is a bottle of pills that Jeff isn't taking. He was ordered off them after his last blood test showed they're damaging his liver -- a common side effect of many HIV drugs.

Thirty years into the history of AIDS, a wave of children who were born with HIV -- kids like Jeff -- are coming of age. "They call it 'die-slow,' you got that 'die-slow.'"

It's warm in here with the late afternoon sun on the windows. Jeff doesn't wear a shirt. His chest is tattooed with an ornate cross: "Something for my dad and my mom."

Jeff believes both his parents died of AIDS, although no one told him that. It wasn't something his family talked about. He doesn't really remember his mom -- he was 3 when she died -- but he remembers his father as a generous guy. And he recalls his dad's response when he asked about all the medications he had to take as a kid: "He'd start crying and just say I have a heart condition."

Jeff was 11 when his father died. An aunt took him in. She was the first person to tell him his medications were not for a heart condition.

If Jeff could talk to his father now, he would probably be angry.

"I gotta go through all this s--- by myself," Jeff says. "I feel like it's too much to carry on my back."

As he talks, Jeff's cellphone vibrates on the bed next to him.

"Hello?''

"He died?''

"Just now? Just now?''

"OK."

THE LOSSES

Jeff hangs up. One of the young adults from the support group is dead. Jeff has lost five people to AIDS this year.

Jeff was 11 when his father died. An aunt took him in. She was the first person to tell him his medications were not for a heart condition.

"In the early years, these children had a very short lifespan," says Dr. Gwendolyn Scott, one of Jeff's doctors and director of the division of pediatric infectious disease and immunology at UM's Miller School. She's part of a team researching long-term outcomes for children who grow up with HIV. A little more than half of the children who were born HIV-positive in 1989 are still alive.

TOXIC DRUGS

Scott says that while treatments for the virus have made it possible for kids to survive into adulthood, the drugs can be toxic. Research shows children who grow up with HIV are at an increased risk of diabetes, heart problems and liver and kidney damage. Adolescents are vulnerable to developing drug resistance because they are especially likely to break with their drug regimens.

"They want to be like everyone else," Scott says. "Taking those medicines even once a day in their minds makes them different."

Some of the kids do live basically like everyone else. They tend to be the ones with strong family networks. But Scott says many of her patients have the added difficulty of growing up in poverty, often without a support network.

"They have hopes and dreams," Scott says. "Many times  you see those hopes and dreams dashed."

AROUND THE CORNER

When he was still healthy, Jeff enrolled for medical-billing classes so he could get a job. But he started wasting, a symptom of AIDS, and dropped from about 115 pounds to 84 pounds. He was too weak to go to school.

"You think about everybody that died," he says.

He lost so much weight, he said, that he felt death was "right around the corner."

These days, Jeff spends a lot of time at home, watching Lost through his Xbox. He says he doesn't have the energy or inclination to go out for anything much beyond doctors' appointments.

Because of the virus, Jeff is in limbo. He wants to go to school and get a job and have a normal life, but he can't do that unless he's healthy. So he waits -- for the scales to tip toward health, for the latest round of drugs to kick in, for his life to move from childhood to adulthood.

Sammy Mack is a multimedia producer with HealthyState.org. This story first appeared in the Miami Herald on May 28, 2011. It's part of a series on the 30th anniversary of the AIDS pandemic.

You can watch a video diary of one of Jeff's friends here: