WASHINGTON — Chelsea died of stigma.

The official death certificate lists the cause as pneumonia. But Dr. Sohail Rana, a Howard University pediatrician who specializes in HIV/AIDS, says that’s not what killed her.

“I had been her doctor since she was a little child,” Rana said slowly. “She liked to call me dad.”

Rana explained that Chelsea contracted the disease at birth from her mother. He recalled that she had a great sense of humor and how she told him she wanted to be a standup comedian some day.

“But behind her laughter was a broken heart,” Rana said. “Many people around her made her feel dirty because of her illness. They kept her dishes separate from the rest of the family, and they sanitized wherever she sat.

Chelsea felt ashamed, isolated and rejected, Rana said, so, she stopped taking the lifesaving medicine she needed, because it reminded her that she had HIV.

And last year she died.

“I still remember the date,” Rana said. “It was Nov. 4. It wasn’t really the pneumonia that killed her. Many people with HIV have long and productive lives. She couldn’t stand the shame and rejection. She couldn’t stand the stigma.”

Rana, clinicians, HIV/AIDS survivors and activists and others from around the globe are coming to Washington and inviting Washington-area residents to help them stamp out stigma during the second International Conference on HIV Stigma from 8 a.m. to 4 p.m., Dec. 1, World AIDS Day, in the Blackburn Center Ballroom on Howard’s campus.

The event is free and open to the public. The theme is “Stigma, the virus we can all cure.”

The purpose of the conference is to save lives by showing how people with HIV/AIDS are stigmatized. Consequently they are less likely to seek help and more likely to spread the disease to others.

“We want to make people aware of how stigma really colors the life of an individual with HIV and it makes all prevention efforts fail, because individuals feel uncomfortable revealing their diagnosis to anybody, even doctors.”

“Stigma is real. There are 70 countries that won’t let you enter if you have HIV. These people are ridiculed. Imagine how different it is for them versus a patient with cancer, or heart disease, diabetes, people struggling with obesity.”

Margo Isaacs, 58, knows about that stigma firsthand.

Isaacs, a regional coordinator for Indiana, Ohio and Michigan for the National Association for People with Aids, was diagnosed in 1992 with HIV as she was giving birth to her daughter.

“While we were in the delivery room, the obstetrician looked down at me and asked ‘How long have you been HIV-positive,’” said Isaac, who contracted the disease from her daughter’s father. “My best friend was in the delivery room and she knew, but I didn’t tell anyone.”

Instead, she ran from the stigma associated with the disease, and for the next 10 years, she kept it a closely guarded secret.

She moved to San Jose, Calif.

“I figured I’d start somewhere fresh where no one knew me,” said Isaacs, whose parents were deceased.

She worked as a social worker at a medical facility and she heard how the other social workers and the medical staff spoke disparagingly of people with HIV/AIDS.

“Those folks who worked in social service or the medical field did not want to work with clients who were HIV-positive,” Isaacs recalled. “I would hear my colleagues talking about not wanting to accept a person because they are positive, and here I am positive.”

When her daughter, who was infected with HIV through birth, began to show symptoms of the disease, Isaacs ran again, this time to Phoenix, Ariz.

Not long after her arrival, her daughter died at age 2 of complications from AIDS.
Isaac moved back to the Washington area in 1997, and through help from people at the Women’s Collective, a health organization for women with HIV/AIDS, she found the strength to talk openly about her disease.

Rana and others with the conference say they hope it will allow others to embrace their illness and make the public more compassionate.

“Everybody knows someone like Chelsea, a person with the disease who is hiding. We want people to make it possible for that friend, that family member to share without made to feel dirty and ashamed.”