The Miami Herald, Inc.; Saturday, March 22, 1997
Stephen Smith; Herald Health Writer

Then, a few weeks ago, came a shimmering ray of hope: For the first time since the start of the epidemic, the virus claimed fewer people in 1996 than the year before, largely thanks to promising new drugs.

But the good news was not spread evenly.

While AIDS killed 21 percent fewer white non-Hispanics in the country, the death rate slowed by only 10 percent among Hispanics. And it was lower still in black America: just a 2 percent decrease.

That chasm has exposed the differing faces of an epidemic now well into its second decade, an epidemic that is a reflection, too, of a health-care system that often does too little, too late for the people needing help the most.

Stigma and powerlessness, poverty and neglect fuel the AIDS divide, a breach that began in the earliest days of the epidemic and persists 16 years later.

"We cannot continue to have a large segment of our population on the outside looking in while we watch them die," said former Surgeon General Joycelyn Elders, who is leading a campaign to empower and educate blacks and Hispanics about AIDS. "We cannot let them die because of lack of knowledge."

The disparity in AIDS deaths is less dramatic in Florida, but still apparent. The death rate declined 28 percent for whites and 20 percent for blacks, which includes black Hispanics. The decrease was most pronounced among Hispanic whites: nearly 30 percent.

But those statistics mask a gloomier reality: While blacks make up 14 percent of the state's population, they account for more than two of every five AIDS cases in Florida.

The AIDS divide manifests in ways profound and symbolic. It can be found in a glittering hotel and in a low-steepled church.

One night earlier this year, a Miami Beach hotel ballroom dressed in twinkling lights brimmed with hundreds of people -- mostly men, mostly white -- gathered to hear the latest on AIDS research. It was a technical, almost clinical discourse.

A few weeks later, the pews of a Liberty City church filled with dozens of people -- mainly African Americans -- struggling to stop the AIDS virus from stealing more lives in their community. In song and words, they were urged to go back to the streets and spread the basics on AIDS education and prevention, to urge people to get tested and get help.

"The first strategies for fighting this disease were not designed for us -- they were designed for the people who were making the biggest cry, which happened to be the gay white male population," said Patricia Kelly, who runs an AIDS service agency on the edge of Liberty City. "Now that the strategies have worked for the people they were designed for, the whole strategy has begun to change -- the strategies are beginning to be designed around the newest drugs.

"But we haven't even reached the first level yet."

The epidemic Kelly confronts when she peers out the bar-clad windows of her office on Northwest Seventh Avenue is stunningly different from the reality of AIDS on South Beach. When a newly diagnosed patient walks through the door at the agency called MOVERS -- the name stands for Minorities Overcoming the Virus through Education, Responsibility and Spirituality -- it is never just about AIDS.

"If you don't have food in your refrigerator, when you come to me, you're not coming to hear Vanessa spill her guts about how you should take your medications," said Vanessa Mills, who manages the care of MOVERS' clients. "You're coming to me for a food voucher, you're coming to me because you can't pay your light bill."

And they're often coming to her at a point when the disease has progressed so far it's impossible to harness. That late arrival into the health-care system has long contributed to the higher death rates in the black community.

But it's more critical today than ever.

"There has never been a better time for people to consider starting or returning to treatment. We are preparing people to go back to life," said Dr. Alberto Avendano, a leader of the national AIDS campaign with Elders.

Avendano, executive director of the Florida AIDS Action Council, was referring to the arsenal of new drugs that came onto the market within the past 15 months.

Once available mainly to the wealthy or well-insured, those drugs -- called protease inhibitors, and often used in combination with earlier generations of AIDS medicines -- now are being prescribed more routinely to the neediest patients. State and federal dollars are helping cover the stiff price of the drugs -- a full year's regimen can easily cost $15,000.

Even though there are pools of government money to pay for the drugs, that won't matter much if people don't know where to go to get the medicine, or if they wait too long to find out they have AIDS.

"If there's a cure and it's sitting on a mountain but I can't get to it, it won't do me any good," Mills said.

Some AIDS service groups are reaching out, putting down roots on the street corners where the disease is wreaking the most destruction. Agencies -- especially those founded by gay men at the dawn of the epidemic -- have been criticized for failing to follow the virus to all the neighborhoods it invaded.

When John Weatherhead took over five years ago as executive director of Broward's biggest AIDS agency, Center One, he found an organization that resembled the earliest face of AIDS: largely white and male.

So he started hiring workers who more closely resembled the people Center One was helping. And they started support sessions in Spanish and Creole. And the people in those support sessions developed webs of support and outreach.

"In our Hispanic group, every week somebody brings in this major meal," Weatherhead said. "It's part of their experience, their tradition. But we used to have rules that you can't have food and drink in support groups because somebody might spill something and get the carpet wet.

"Well, who really cares about the carpet?"

In Homestead, doctors are using patients to help heal the community. The University of Miami's Dr. Allan Rodriguez knew his physicians and nurses weren't reaching all the people stricken with AIDS in Homestead's black community.

"They go out and persuade people they know to get tested," Rodriguez said. "They tell them care will be provided no matter their legal status or whether they have insurance. And people are listening."

They're listening, too, in Health Crisis Network's new satellite offices. The agency, Dade's largest provider of AIDS services, has an outpost, for instance, in Florida City and hopes someday to have counselors stationed in Hialeah and Overtown, too.

Tangela Sears' brother was among the black Floridians killed by AIDS last year. He was a gay, black man in Liberty City, who confronted the pain inflicted by the disease -- as well as the stigma of AIDS in his community.

When her brother died last May, Sears vowed that there should be no more funerals. So she has taken to the streets, lecturing about the disease. She has staged talent shows, to entertain and educate, and marshaled gospel singers to inspire.

"I feel that if I would have known a lot of the things that I know now," Sears said, "my brother would have received more appropriate treatment. And just maybe, my brother would still be living today."

DISPARITIES IN AIDS DEATHS PROMISING NEW DRUGS ADN IMPROVED HEALTH CARE HAVE RESULTED IN A DROP IN AIDS DEATHS FOR THE FIRST TIME SINCE THE EPIDEMIC BEGAN. BUT THERE ARE DISPARITIES BETWEEN RACIAL AND ETHNIC GROUPS. NATIONALLY, THE DROP IN AIDS DEATHS BETWEEN 1995 AND 1996 WAS 13 PERCENT OVERALL, 21% FOR WHITE NON-HISPANICS; 2% FOR BLACK NON-HISPANICS AND 10% FOR HISPANICS. BELOW IS THE BREAKDOWN FOR FLORIDA. THIS STORY WAS PRODUCED ON THE MACINTOSH GRAPHICS SYSTEM AND COULD NOT BE INCLUDED IN THIS TEXT LIBRARY DATABASE. PLEASE REFER TO MICROFILM FOR THIS DATE. WHERE TO CALL

* In Dade, Health Crisis Network runs an English-language hotline for adults that can be reached at (305) 751-7751; the Spanish-language hotline for adults is (305) 759-1213. The adult hotlines are staffed from 9 a.m. to 9 p.m. Mondays through Fridays, and 10 a.m. to 3 p.m. Saturdays.

Beginning April 1, a teen hotline, with volunteers who speak English, Spanish and Creole, can be reached at (305) 751-9167 from 3 to 9 p.m. Mondays, Wednesdays and Fridays, and 10 a.m. to 3 p.m. Saturdays.

* In Broward, Center One provides information at (954) 537-4111 from 8 a.m. to 10 p.m. Mondays through Fridays. Although the hotline is answered in English, Center One has staffers who speak Spanish and Creole.

* Be Smart about HIV is a national AIDS campaign started by a consortium of AIDS groups and a drug company. For more information about the campaign call 1 (888) 873-2844 in English or 1 (888) 284-3373 in Spanish.

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