"To not speak on it, to me I'm offended by it," says Dyana, who identifies herself as an HIV/AIDS outreach educator for an organization called the Guardian. Dyana (who asked that her last name not be used) is a 40-something African-American HIV-positive mother of two children (both HIV-negative) and just a little bit outspoken about the disease. "I've had people come up to me and say, ‘That was bold of you.' And some mean it in a nice way, some mean it in a negative way. I don't really give a damn what you think, because what's done is done. It's not something I asked for, hoped for, wished for. It happened. It's done. I'm living with it."
In Orange County, one African-American in 90 is HIV-positive or has AIDS, according to a new report from the Florida Department of Health titled "Silence Is Death: The Crisis of HIV/AIDS in Florida's Black Communities." That's a statistic about as promising as a loaded gun, considering that the figure is one in 284 for Caucasians and one in 237 for Hispanics.
The report breaks down the disproportionate representation of minorities in the state's towering caseload (second only to New York in new cases in 2004, according to the U.S. Department of Health and Human Services Centers for Disease Control and Prevention) as a means of stirring up activism in black communities. It was quietly released in August in Florida's two most affected counties — St. Lucie (one in 35 African-Americans HIV-positive or has AIDS) and Palm Beach (one in 42) — then put out locally Sept. 5, Election Day, which meant that it received no press coverage.
"To mobilize a comprehensive response to the HIV/AIDS crisis among blacks will involve a greater engagement and commitment of many groups: federal, state and local governments, black leaders, churches, civic organizations, businesses, schools, parents, policy- makers, and those living with HIV/AIDS," the report says.
That's an almost insurmountable order considering that in the real world, few black people seem to want to talk about AIDS, says Debbie Tucci, the HIV/AIDS program coordinator at the Orange County Health Department. "You're talking about sexual orientation, you're talking about drugs, you're talking about being ‘on the down low' — men having sex with men who are married with children. The centerpiece of the community is their church," she says. "Ministers don't talk about homosexuality, don't talk about injection drug users, don't talk about men ‘on the down low.'"
Tucci and the health department called an emergency meeting Sept. 12, inviting candidates, commissioners, the NAACP and anybody who wanted to come in to discuss strategy. About 40 made it, including Orange County Commission candidate Tiffany Moore and a representative from the NAACP. Those in attendance watched an Aug. 24 Primetime Live special, "Out of Control: AIDS in Black America."
"That's how we opened it up," says Tucci. "It's really well-done, and it makes you really angry. Every commercial break, we stopped it and let people process what they'd just seen. After we did that, and had all these discussions, we handed out the ‘Silence Is Death' report."
The report's name is a throwback to the "Silence=Death" campaign of the '80s that pulled the gay minority out of obscurity, got them angry and dropped them into the mainstream. The result was a dramatic decrease in new AIDS cases among gays.
That same anger, says Tucci, is what's missing today among blacks.
She describes one scene in the documentary in which a reporter grilled the Rev. Jesse Jackson on what he has done about HIV/AIDS. When he answered with commentary on the relief efforts in Africa, the reporter stopped him. Then Jackson did the same thing again.
"If I were African-American, that would anger me," says Tucci. "And that's where I said at the meeting, ‘Why doesn't that alone make you just want to stand up and scream from the rooftops? Your community is dying here, and all that money is going to Africa.' Not that Africa's not important — it's important. But it's awful that we have people dying here every single day. They're still dying. They're dying with nobody talking about it. They're dying with nobody by their sides. You don't read it in the paper. I look at the obituary of a young black man, and just look at the age. It's the No. 1 cause of death for 25- to 44-year-old men and women who are black. `But people think` they don't die of HIV. They don't die of complications from AIDS. It's not going to be identified if you don't ever talk about it."
The risk of "Silence Is Death" backfiring is real, considering that a similar outreach several years ago called "Break the Silence, Make the Change" — featuring posters with scary statistics — produced the wrong kind of anger. People were more offended by the outreach than they were moved to do something about it, she says.
And there's also the possibility that blacks will discount the effort as just more talk from the white establishment about what they should and shouldn't do. There are good reasons, Tucci notes, for distrust — for example, the Tuskegee Syphilis Study, which ran from 1932 to 1972. In that study, 399 poor black Alabama sharecroppers with syphilis were purposely given inadequate treatment so that researchers could watch the progression of the disease.
Orange County's approach is couched in community involvement.
"There is an element of ‘We've got to talk about it.' And there has to be an element of ‘in-your-face,'" Tucci says. "And it isn't saying that you're the only race. But you happen to be disproportionately affected. What the report does is it shows you white, black and Hispanic. So you're seeing all three. When you look at it, no matter where you are — whether you're looking at ‘one in' statements or incidents or prevalence — every place you go, black disease is higher than Hispanic disease is higher than white disease, in HIV cases."
What works for one group of people doesn't necessarily work for another, she adds. "The prevention methods that worked on the gay white community don't necessarily work on the Hispanic community, or on this community, or on the gay white community of today. We get stuck. I've been around forever, and I can tell you we get stuck."
At the Sept. 12 meeting, participants decided to seek out faith-based leaders in the black community to devise a plan of action. It's a strategy they hope works.
"You try to get in — to get that one person, that alpha person. That's what we're talking about in the faith-based community," says Tucci. "‘Who is the leader in the black and the African-American community? Who is the one pastor?' There are probably six names that came out of the meeting the other day. Those six names, the people who said them, we said, ‘Go to them.' We just need one. Someone to step forward and say, you know, ‘Let's organize.' They don't necessarily have to work on our task force — it would be nice if one of them would — but at least one of them has to step up to the pulpit on a Sunday and start talking about it."
The idea is to reduce the stigma of AIDS among blacks, thereby making it more likely that people will come out and be tested. Developments in rapid testing, including a mouth-swab test that can produce results in 20 minutes, mean that the technology exists to slow the spread of HIV. But people still have to be willing to be tested.
And someone still has to do the legwork, like handing out condoms door-to-door, inquiring about whether or not residents have been tested and explaining treatment options.
Dyana, the HIV-positive mother of two, is a devout Christian. She has spoken in three Seventh-Day Adventist churches in the past six weeks. "They don't do sex there," she says. "They got little kids running around there, but there ain't nobody having no sex!"
Nonetheless, she says the reception has been "phenomenal," though one church refused to allow her to display her materials.
"I believe that just in the last few weeks God has opened some enormous doors as far as churches in the community that have not been to the table, that have not been involved," she says. "For me to know that that's going on, I think he's making preparation. I think he's making preparation and aligning them with some powerful men of God as well. It just takes the one voice to get it going, and then there's an echo effect after that, and I see that happening."
The Central Florida AIDS Planning Consortium has scheduled a meeting to discuss "Silence Is Death" 11 a.m. Nov. 9 at the Heart of Florida United Way, 1940 Traylor Blvd., Orlando. Call (407) 835-0900, ext. 353 or 375, to RSVP or for more firstname.lastname@example.org