Young adults who have lived their whole lives with HIV

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Last spring, Lafayette Sanders got a call from a friend who was concerned about his reputation. The word on the street, she said, was that he and his girlfriend had HIV, the virus that causes AIDS.

It was true about Sanders, and he told her so because his friend was so supportive. But Sanders, then 23, also decided that he needed to tell all his friends that he had been HIV-positive - for his entire life.

Sanders, of West Philadelphia, belongs to a rare group; he was born HIV-positive when he was perinatally infected via his mother either during pregnancy and delivery or breastfeeding.

At the time, HIV was a death sentence. Sanders and several thousand other infected babies weren't expected to live very long.

But thanks to more than two dozen drugs, the oldest babies are now reaching 30, and living into uncharted territory.

Their challenges are daunting. Along with homework, puberty, and just surviving the rough streets of Philadelphia, they've dealt with losing sick parents and friends, disclosing their status, engaging in sex with uninfected partners, and enduring medical side effects with unknown consequences.

Sanders, now 24, has experienced it all. "My main goal is to get people to talk about HIV," said Sanders, a brand rep for a clothing line and peer educator for iChoose2live, a Philadelphia-based youth program that encourages HIV awareness and career building. "I want to destigmatize it."

More than a million people are living with HIV in the United States, mostly contracted from sex or drugs, according to the Centers for Disease Control and Prevention. Just 1 percent got HIV perinatally or through the bleeding disease hemophilia and blood transfusions.

In 2007, an estimated 7,757 people were living in the 37 states reporting to the CDC who had been diagnosed with perinatally transmitted HIV before age 13.

In Philadelphia, where the overall HIV infection rate is five times the national average, at least 272 current residents were perinatally infected, though officials say the figure could be far higher.

Social worker Christine Ambrose has seen many changes over the last 20 years. "Back in the day, it was about preparing families to lose their kids," said Ambrose, who directs the Adolescent Initiative at Children's Hospital of Philadelphia. Now the survivors are "living these incredible lives, but with a lot of barriers, given they weren't expected to live long."

The first AIDS cases came to public attention in 1981, and doctors could do little to stop mother-to-child transmission. It wasn't until 1995 that a clinical trial found that the HIV drug zidovudine, or AZT, could reduce perinatal HIV transmission. The drug was so effective that the researchers stopped the trial earlier than planned. The use of AZT during pregnancy and a course of medicine for the newborn just after delivery dropped mother-to-infant transmission from 20 percent to 8 percent. Fifteen years later, the rate is down to 1 percent, thanks to newer drugs and better care.

Recent numbers show the problem has abated further but not disappeared. From 2005 to 2008, there were 452 infants born to HIV-positive mothers in Philadelphia. Of those, 14 babies tested positive for HIV.

The mother's placenta naturally protects the baby from infection, says Kenneth Dominguez, a CDC epidemiologist. But if the mother is sick, isn't on medication, or is close to developing AIDS, she is more likely to transmit through the placenta. During vaginal delivery, the mother's blood can get on the mucus-laden areas of the baby, such as the eyes, nose, mouth, or rectal area, where the virus then attaches to white blood cells.

For those who get the disease, just learning about it is an early hurdle. It's common for many young perinatally infected children not to know their status. They might tell their friends or teachers they are positive without understanding the isolation, stigma, and rejection that could follow.

But "it's probably better to [disclose] it before the teenage years," says John Krall, family services manager at Children's Hospital's Special Immunology Clinic. "With the younger kids, it feels a little less murky than a teenager who's trying to deal with their identity and interest in sex."

Sanders remembers his mother talking to him at age 13 before she died of kidney failure - a common AIDS complication - in 1999.

" 'Just make sure you take care of your sister and stay healthy,' " he recalls her saying. "I didn't know what she meant at the time."

He finally learned about his condition when his grandmother took him to Children's Hospital later that year.

Deceased parents are another fact of life among his peers. "We don't have any teens and young adults born with HIV with both their parents alive," says physician Jill Foster, director of the Dorothy Mann Center for Pediatric and Adolescent HIV at St. Christopher's Hospital for Children.

Many young patients also have a hard time taking their drugs consistently, which is critical in keeping the ever-changing HIV virus at bay.

Children's Hospital loses an average of one older teen a year who failed to take the drugs, said Richard Rutstein, Sanders' doctor. "They make a semiconscious decision not to take their medicine," Rutstein said. So "there is not a conversation that doesn't include something about adherence and social behavior."

Sanders openly admits to periods of non-adherence.

"I sometimes do forget to take it," he said. "Like last year, I didn't want to deal with it all.

"But as I started to mature, I realize I need to take them to be healthy."

There are also questions about toxicity, with no clear answers on what it means to be on these medications for decades. Common side effects include kidney and liver problems, plus the body-distorting disorder Lipodystrophy, which causes fat to leave the face and arms and collect around the belly.

"Sometimes I do worry about how it's affecting my body," said Sanders, though side effects have yet to appear.

All these burdens add up and create still more. "They're dealing with depression, mental illness, and obviously the physical challenges," said Krall of Children's Hospital.

Chaneil Scott, 19, of South Philadelphia has come through it all intact. She knew from an early age she was HIV-positive. Every day she had to swallow a syringe's worth of liquid AZT, the first approved HIV drug.

But she didn't know what that meant until after her mother died and she moved in with her foster mother. She educated Scott by giving her children's books on the disease and sending her routinely to see a pediatrician.

"At first, I was scared to tell people," said Scott. "But I never got a negative reaction so I felt like a regular person." Now a sophomore at Millersville University in Lancaster County, she just became a peer health educator and would like to go into public health.

Not everyone is so lucky. Doctors and social workers in the city speak of the trauma their patients have experienced, like losing friendships over disclosing their status and being bullied. One child had "AIDS BOY" scribbled on the front of his locker.

Pejoratives like "the ABC" and "Kittycat" are used to describe people who aren't "clean," another offensive term for those with HIV.

"As disenfranchised as you are, you can always find someone else to pick on," noted Theresa Parrino, assistant director at St. Christopher's adolescent center.

"A lot of people think HIV and AIDS has a certain look," added Sanders. "It was always weird to hear my friends talking about it because I'd think 'I didn't choose this to happen to me.' "

Sanders has a tattoo on each forearm; the left one bears lyrics from the late hip-hop artist 2Pac: "Hold on and be strong, God bless the child that can hold his own." The right arm reads, "RIP Crystal" - his mother.

Finding a girlfriend has never been hard for him. He lost his virginity at 13, he said, and has had several girlfriends before and after he began disclosing his illness. But he admits he has not been 100 percent responsible - even when his partner knew.

For the record, he says, the girlfriend, now his ex, who inspired him to be more open is HIV-negative. So is his younger sister, whom he declined to name.

And while at least one close relative wishes he would be more private, he sees his mission as putting a face on HIV.

"One person can change the world," he said. "Look at Rosa Parks, Martin Luther King, or Harriet Tubman."

 


Contact Brooke Minters at Brookeminters@gmail.com