Miami Herald - December 1, 2002
Andrea Robinson, arobinson@herald.com

Most of them were born with the virus. She's lived with it since she was 7. At 20, she's somewhat of an elder stateswoman.

When should they tell a boyfriend or girlfriend that they have HIV, they ask. Her advice: First, ask how they feel about the virus.

"If they're [unaware], you'll have to educate them on the subject.

But if they're close-minded, you may need to leave them alone," she says.

Stephanie advises this cautious approach out of her own experience. She didn't probe people's feelings before she told them she was HIV-positive. She's still pained four years later by memories of how classmates, kinfolk and neighbors rejected her.

Since then, Stephanie, who doesn't want her last name used, keeps mostly to herself and pitifully few family members. She lectures about the virus at places where her identity is protected.

"I became an outsider in my own neighborhood," she said.

PSYCHOLOGICAL TOLL

Stephanie's experience -- and her way of dealing with it -- illustrate the psychological toll that AIDS continues to take, 21 years into the epidemic. As health officials and activists mark World AIDS Day today, they vow to combat the stigma and discrimination, as well as the disease.

Their message: People who aren't infected need to have greater sensitivity and compassion for those who are.

HIV and AIDS have swept across Florida, particularly at the southern tip. Miami-Dade, Broward and Palm Beach counties rank second, fifth and sixth respectively in infection rates among major U.S. metropolitan areas, according to the U.S. Centers for Disease Control and Prevention.

Tom Liberti, head of the state HIV/AIDS office, said about 4,000 people are infected each year in Florida. About 37 percent are women; 58 percent are black. The number of new South Florida cases reported this year: 805 in Broward, 1,360 in Miami-Dade, 21 in Monroe and 414 in Palm Beach.

Liberti will meet this week in Tampa with health officers from 12 other Southern states and the District of Columbia on how to bring AIDS prevention back into the public consciousness.

The southeastern United States has been disproportionately hit and now has more people living with AIDS than any other U.S. region.

"The purpose is to keep this fire burning, to keep it at the top of the public health agenda," Liberti said.

Numerous federal and state laws have been enacted in the last 20 years to protect AIDS patients from discrimination. Most public school systems have incorporated HIV awareness into their curriculum.

But fewer people say they understand how the virus is spread. A survey published this year in the American Journal of Public Health found that more people blame those with AIDS for contracting their illness than in 1991.

VICTIMS' SILENCE

Dr. Lawrence Friedman, head of the adolescent medicine department at the University of Miami and Stephanie's physician for the last four years, said people who've lived with the virus since childhood learn to be silent about their condition.

"They've been taught by parents about stigma. They don't want to be taunted and called names," Friedman said.

Stephanie learned the hard way.

She received her diagnosis at 16, after landing in the hospital emergency room with a high fever and a sore on her neck that wouldn't heal. By then she had developed full-blown AIDS.

When cousins and folks in her Little Haiti neighborhood found out, they accused her of being promiscuous. Classmates she had known since elementary school avoided her.

ABUSE

At the hospital Stephanie revealed a secret: Since age 7 she had been molested and raped numerous times by two adult men. Both were friends of the family, and both had the virus. Medical tests later confirmed she was infected around that time.

Her reaction to the diagnosis stunned her mom and the attending nurse. She smiled.

'The nurse said, 'Don't you understand what this means?' I said, 'Yes, it means that I'm free. They'll stop molesting me and I won't have to be scared no more.' "

Her rationale: People with the virus were untouchables in her neighborhood. She saw others being treated that way when she was a little girl. Now she was just like them.

Stephanie keeps AIDS in check by sticking with her drug regimen -- three pills in the morning and two before bedtime. It's a far sight better than two years ago, when she took seven in the morning and seven at night.

She talks to peer group meetings about how she became infected and what her life has been like since her condition was diagnosed. She visits several U.S. cities each year to tell health professionals and others about how to improve the attitudes of people who struggle with the disease.

But she tells her story as if she were talking about someone else, not admitting she is the one who is infected -- at least not in the beginning.

"If I tell straight up about myself, when I get to the hard part, it hurts," she said.

Her worst fear: sharing her story in Little Haiti. She has moved away. But her mother, a seamstress, still lives there. She isn't infected, but neighbors refuse to buy the comforters and quilts that she makes.

'STIGMATIZED'

Dr. Laurinus Pierre, a physician and director of the Center for Haitian Studies, a local research and outreach agency, said he's working to soften such attitudes. He blames "irresponsible" CDC reports in the 1980s that identified Haitians as primary carriers of the disease. They were later removed from the CDC list.

"Haitians were stigmatized, and it's a direct result of that," Pierre said. That stigma, he said, makes it hard to convince Haitians to get tested or take preventive measures.

"They won't get treatment." Pierre said. "It's very hard to convince them because of those stereotypes."

Stephanie said she hopes that people will use the World AIDS Day commemorations to discuss ways to erase those stereotypes so people like her will be more accepted.

"People think AIDS won't hit close to home," she said. "But if it does, don't make them feel like an outsider. He or she is still part of your family. Love them."

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