Young adults who have lived their whole lives with HIV

September 13, 2010|By Brooke Minters, Inquirer Staff Writer
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  • LAURENCE KESTERSON / Staff Photographer
  • LAURENCE KESTERSON / Staff Photographer

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.

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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."

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