Although awareness of HIV is widespread in the New York neighborhood, translating knowledge about safe practices into action is a different story.
The gold reception room in Canaan Baptist Church of Christ in Harlem seemed very large one Saturday afternoon, with about a dozen people sitting inside, praying and recalling those who had died of complications from AIDS.
The few people filled out paperwork to get tested for HIV in a van that waited outside, while a man with HIV lectured the small audience on the virus. When asked the ways in which the virus is spread, a man in the audience incorrectly said "saliva." Others were surprised that people with non-detectable HIV, meaning the virus is under control, can still pass it on to others.
The Vivian L. Potter HIV Ministry, an HIV and AIDS activist group within the Canaan Baptist Church of Christ, usually has as many as 100 guests at its events, says Babette Hudson, the chair of the organization. It was the day of Whitney Houston's funeral, and she says she believes people stayed home to watch. The small turn-out made no difference to her, though.
"If you touch one person, it's good enough for me," Hudson says.
The HIV ministry has been operating since the early 1970s.* When the program first began, the pastor at the time, Reverend Wyatt T. Walker, thought it was important to have an HIV ministry because the epidemic had an impact on the African American community. Today the program organizes prevention-based outreach events to educate the Harlem community.
"We began to do a lot of funerals here at Canaan for people who died of the virus," Hudson says. "We began to lose a lot of members, particularly in our male chorus because a lot of them were MSM's [men who have sex with men]."
Hudson says many of the churches in Harlem are just as active as Canaan, and dismisses the myth that African American churches don't talk about HIV and sex.
"Yes, we do talk about condoms. Yes, we do give out condoms. Yes, we do talk about sex," Hudson says. "I would say that myth goes back to my mother, my mother's generation--and my mother's 80 years old. There was a time when there were things you didn't talk about. Churches were the places you went to worship God and you went home, but as society began to change, as the issues began to change, it was taken for granted they just didn't talk about it."
The adherence rate for taking HIV medicines in Africa is much higher than it is in the U.S., says Dr. Monica Sweeney, the assistant commissioner for the bureau of HIV/AIDS prevention and control at the New York City Department of Health and Mental Hygiene. People with HIV and AIDS in Africa don't have the safety net people have here, she says, and they take the medication to get healthy and to sustain themselves.
"In the U.S., in New York City, if you are HIV positive, the care, support system and medications are available--so why are people coming to get treatment when they already have AIDS?" Sweeney says. "We are going to continue to do primary prevention to keep people from becoming positive with a disease that's almost 100 percent preventable."
She says despite an increase in HIV education, the number of people testing too late is still quite high. One in 4 people already has AIDS when they get tested, she says, and health experts now know the sooner a person gets treatment, the better their health.
On the other hand, when people test negative, they believe it justifies having unsafe sex, Sweeney says.
"It emboldens women to continue having unsafe sex," she says. "Many people know what to do, but they don't put into practice the methods they know."
Rob "Simply Rob" Vassilarakis is currently the outreach specialist and intake coordinator for the day program at El Faro adult daycare center -- an outfit operating under Harlem United, a community-based organization offering support to people living with HIV and AIDS. He reaches out to other organizations and medical providers, in hopes of recruiting new members to enroll in the day program.
Vassilarakis, whose family is from El Salvador, sometimes wonders if all the effort being done in the community to fight HIV and AIDS will actually break through the walls of ignorance and denial about the disease, as well as people's feelings about homosexuality.
"I think there's still a lot of denial about how relevant HIV is. I think people tend to associate HIV as being a gay disease or something that junkies do or this is God's wrath," he says. "In a lot of Latin religious circles, I think people think this is the plague people talk about in revelations. I think there is a lot of stigma and people need to wake up because HIV knows no borders."
Until his mother read his journal and found out he was gay, Vassilarakis lived a double life. He didn't want his family or friends to know about his sexuality because he was afraid of how they would react.
Two years after his mother threw him out of the house, he dated the man who introduced him to crystal meth and gave him HIV--knowing he had the virus.
"I was kind of promiscuous. I dated him, but we weren't in a monogamous relationship, and I knew that he was involved with others as well," Vassilarakis says. "I was feeling invincible I guess. There are some sexual practices that are more risky than others, and in some way I thought I was not really....I wasn't really practicing the riskier types of sex. I thought I was not going to be exposed, but I was."
He tested positive in 1993, just shy of his 23rd birthday. Vassilarakis says the doctor assured him that the test would come back negative, and he could see that the doctor was distraught as he walked into the room to tell him that the results were positive. It was the first time the doctor had to give anyone a positive status, and Vassilarakis says he was upset that he had to give one to someone so young.
The doctor told him that he had approximately seven years to live, but Vassilarakis refused to go on medication, and today he believes it saved his life; he feels that the medications in the early '90s were toxic.