The Miami Herald, Inc.; Saturday, 20 September 1997.
Stephen Smith, Herald Health Writer

With AIDS, failing to do that can mean the difference between life and death.

As America's AIDS divide widens, as the epidemic ravages African-American and Hispanic communities, the determination to reach those audiences has turned feverish.

You can feel it among the 2,500 people gathered in Miami Beach for the U.S. Conference on AIDS, the people whose lives and vocations are framed by realities like this: In 1996 for the first time, more African-Americans received a diagnosis of AIDS than any other group in the country.

The old ways of doing things -- many of them devised when AIDS was principally a disease of gay, white non-Hispanic men -- have not translated well in other communities.

"The color of your skin," said Paul Kawata, executive director of the National Minority AIDS Council, "should not determine whether you live or die."

How can AIDS be stopped? The answer is complex. It means surmounting cultural barriers and old stigmas about AIDS and gays in the African-American and Hispanic communities. It means persuading immigrants to trust government agencies and understanding the legacy of suspicion wrought in the African-American community by unspeakable medical experimentation in the past.

And it means being creative. As one AIDS activist put it: You have to know your market.

That's what Tangela Sears says, too. Her brother died of AIDS a year ago, and she has spent the past months treading the streets of Liberty City, telling her story, her brother's story.

And she has done it in ways that struck some people as curious at first. She has enlisted the rapper Luke Campbell and radio personality Jill Tracey. She has sponsored talent shows and basketball games and candlelight vigils.

At each of them, a van from the University of Miami discreetly rolled in, to perform AIDS screenings.

"Sometimes, people don't understand why I do what I do. `Why do you do the talent show? Why do you use Luke? Why do you use Jill Tracey? They're not experts on AIDS.'

"You know what? They're right. But our purpose is to bring literature in, to talk to them about HIV, about what's going on in our community. We want them to know it's real. And I'll do whatever I have to do to let them know that."

This is what they did at Center One, Broward's biggest AIDS agency: They started a support group for Hispanics. And, at first, they structured it just like all their other support groups.

Didn't work.

"One of our staff members who is Hispanic came to me and said, `John, if you want Hispanics to come, you've got to have food here, and there's got to be music in the background," said John Weatherhead, Center One's executive director. "You have to let them live their culture within Center One."

The smell of food and the beat of music now waft from the weekly support groups, drawing dozens of people with AIDS and the virus that causes it.

It is, said Charlene Doria-Ortiz of the Center for Health Policy Development in San Antonio, one way of speaking the language.

The disease, Hispanic AIDS patients tell her, is not my disease. It is our disease, an epidemic that consumes the whole family.

"Which means," Doria-Ortiz said, "that what we need to do is have any array of 31 flavors when fighting this disease. So many things we value, we tailor make it. We do it with suits. We must do it with AIDS."

Otherwise, activists fear, the divide will grow wider, especially in the era of protease inhibitors. A lack of drugs and information fuels the widening gap, AIDS experts believe.

If you don't have the insurance or cash for drug cocktails that can cost $15,000 or more a year, there are places you can turn to -- Medicaid and state AIDS drug assistance programs, for instance.

But to do that, you need something more than money -- to get through the bureaucratic labyrinth, you need knowledge, a commodity that a new study suggests is desperately needed in some neighborhoods.

A study by Philadelphia researchers released at the conference shows that one of every three people with HIV who were surveyed said they did not need to go to the doctor regularly.

"So the problem is not as simple as people portray -- it's not just a matter of people failing to get the drugs," said Moises Agosto, director of research and treatment advocacy for the National Minority AIDS Council, sponsor of the AIDS conference. "It's people not getting access to the knowledge about the existence of these drugs."

Activists believe that's particularly acute in the African-American and Hispanic communities. And that lack of knowledge even extends to some of those whose job it is to help people with AIDS.

Agosto was in New York a few months back, meeting with people on the front lines of the epidemic. He started talking about the drugs that have altered the course of the crisis, powerful medicines called protease inhibitors.

A man in the crowd -- a case manager who helps minority AIDS patients get treatment -- raised his hand. What's a protease inhibitor, he wanted to know.

"I couldn't believe it," said Agosto. "I was stunned."

The prescription for change, people at the conference said, must be written in the communities most affected by the virus. That means recruiting volunteers, making sure drug research includes a broad spectrum of patients, translating treatment and education epistles into accessible language.

"We must demand a change," said Ednita Wright, a social work professor at Syracuse University, "or continue participating in the violence of our silence."

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