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Story Publication logo November 26, 2007

Epidemic Highlights Disparities

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With HIV rates second only to those of sub-Saharan Africa, Caribbean islands that conjure visions of...

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It was 1982 when Dr. Jean Malecki examined a dying 9-month-old baby and made the first pediatric AIDS diagnosis in Palm Beach County.

The parents, who had arrived recently from the Caribbean, were sick, too.

"Within six months, the child had died," Malecki said. "The whole family got wiped out by the disease."

Malecki states this flatly because in the past 25 years, the Palm Beach County health director says, she has seen that flinching from the truth accomplishes nothing.

View videos and photos from local AIDS crusaders

She had started work with the county health department's Belle Glade clinic in 1981, the year doctors in New York and Los Angeles linked a series of deaths to a plague that was dubbed "Gay Related Immune Disorder."

The new acronym came in time to describe what had happened to Malecki's tiny patient, who had gotten the virus from his mother, who in turn likely had caught it from her husband: Acquired Immune Deficiency Syndrome.

Today, the United States is home to more people living with AIDS and HIV, the virus that leads to AIDS, than any other leading industrialized nation. Its numbers are at least triple those of all of the runners-up but one: the Russian Federation.

With more than 105,000 people diagnosed with AIDS in Florida since the beginning of the epidemic, Florida's AIDS case numbers are the third-highest in the nation. The rate of HIV/AIDS among children in Florida is second only to that of New York, and 80 percent of the nearly 2,000 pediatric HIV/AIDS patients in Florida are black.

Palm Beach and St. Lucie counties have the highest rates of infection among black residents in the state and fall below only Washington, D.C., nationally. While black residents make up 15 percent of Palm Beach County's population, they make up 65 percent of people living with HIV/AIDS here.

Even as AIDS has highlighted disparities in access to health care in the world's wealthiest nation, leaders here have failed to respond to the disease as a sexually transmitted epidemic, Malecki says.

She points to a health education program for local schools that reveals how to avoid acne but not how to avoid HIV.
While federal funding is the standard response to a national epidemic, Malecki says, the government has not supported local prevention efforts, and during the past two years has cut money sent to Palm Beach County and the Treasure Coast for the care of people living with HIV/AIDS.

And even as the AIDS epidemic has devastated their communities, Malecki says, religious leaders have remained silent.

'Get tested and live'

Watch videos of Bishop Lewis White

An often lone exception to that, she says, has been Bishop Lewis White, who with his wife, Sandra White, and their United Deliverance Church, has taken education, prevention and care into the county's abandoned streets.

The bishop's newest set of wheels is a used moving van decorated with a painting of a sickly figure struggling to emerge from a half-open coffin.

"You don't have to let the lid close on you. Get tested and live," urge letters painted on the side of the van. "1 in 42 blacks have HIV/AIDS in Palm Beach County, compared to 1 in 503 whites and 1 in 252 Hispanics."

The largest letters advertise: "FREE CONDOMS HERE."

The pastor calls the truck that he bought late last year his "traveling billboard."

It was White's response to a statewide report showing the HIV epidemic's disproportionate impact on black communities in Palm Beach County and the Treasure Coast.

It is also part of an approach that sets him apart from many other area pastors who, he says, won't talk about the epidemic because they won't talk about sexuality and condom use.

"Other pastors have said I'm promoting sex when I hand out condoms. I'm sorry to tell them that is not true. People are having sex with or without condoms. I'm promoting life," White responds. "I'm here for a purpose: not to judge you on who you have sex with, but to judge how careful you are when you have sex."

That approach, as well as his other vehicle, an old red school bus that he turned into a mobile HIV testing site, has helped White, his wife and staff members from United Deliverance Church find a higher proportion of HIV-positive people than any local testing facility.

And in the seven years since he and his wife mortgaged their home to buy the first bus and take their fight against the epidemic to the streets, they have learned how the epidemic works, both say.

'So many people in the cracks'
Poverty, homelessness and unemployment are driving the spread of HIV in communities where conditions have only worsened in recent years, he said.

Jobs that pay enough for workers to afford stable housing are scarce for the people he sees. And with few prospects, young women turn to trading sex for survival.

"They go out there and find a man, and he gives them $20 for just 10 minutes," he said.

"They are getting younger and younger on the street, selling their bodies. We have lost so many people in the cracks because we have nowhere to put them."

In that environment, people recently diagnosed turn to the church, and its purple-and-green painted United Deliverance Resource Center, for help.

Staffers there have long referred new patients to one of the area agencies, including the Comprehensive AIDS Program and Compass, the county's gay and lesbian community center, both of which get federal "Ryan White" money for HIV/AIDS care.

United Deliverance is the only black church to work cooperatively with Compass, in a relationship that has helped both in the past several years, prevention manager Chris Lacharite said.

While a unique alliance, it is a natural one, Lacharite said: "We share the same philosophy of getting people to know their status and linking them to care."

But in 2006, the federal government cut money for services linking patients to care by an unprecedented 13 percent, taking $1.2 million from supplements for groceries, transportation and case management, for an estimated 800 people. The reduction was followed by an additional half-million-dollar decrease this year.

View photo slideshows and videos from local efforts to curb HIV

While Compass can still help those patients get care, the effect of the recent cuts as well as reductions in Medicare has been harsh, Lacharite said.

The most immediate impact has been on money for food, with cuts tightening restrictions on who can get help in finding enough to eat, Lacharite said.

Patients on the lifesaving anti-retroviral drugs need to take the medicine with food and eat regularly, a challenge when the debilitations and demands of the illness put full-time work out of reach.

"We have people who need it," Lacharite said. "But we have to give it to the neediest of the needy."

Another effect of the federal cuts was to eliminate money for substance abuse treatment for the first month of this year's funding, before federal officials reversed a decision to pay only for outpatient care, Lacharite said.

The amount available for addiction treatment remains inadequate, he and others say.

'I'll pray with them'

At the Palm Beach County Jail, nearly all of the HIV patients he sees have drug addictions, says Dr. Pierre Dorsainvil, medical director of that facility.

That is because drug addictions lead to other problems, including trading sex for drugs and being vulnerable to sexual assaults, AIDS experts agree.

Once in jail, inmates have access to treatment for addictions.

Dorsainvil, an infectious disease specialist who grew up in Haiti before moving to the U.S. at 18, also treats a number of Haitian-born HIV patients at his Delray Beach practice.

"I enjoy working with HIV," he said. "Most of the patients I meet think no one cares about them. When I see my patients, I'm not afraid to cry. If they want to cry, I'll cry with them. If they want to pray, I'll pray with them."
Dorsainvil wonders, though, about the patients he does not see.

"There's a lot of patients we don't know about because of their immigration status," he said.

He visits Haiti, where he has a clinic and volunteers through the South Florida-based nonprofit Health Through Walls to serve prisoners in the National Penitentiary there, and contends that the line between that country's epidemic and the U.S. epidemic is perforated by immigration.

Dorsainvil and others say that as Haiti's numbers drop, if numbers here rise correspondingly, it would be hard to tell, as fear of deportation keeps immigrants from seeking medical care.

Immigration policy standing between jobs and those fleeing strife and poverty in Haiti also contributes to HIV risks, driving some into selling sex, Haitian doctor and AIDS researcher Jean "Bill" Pape has pointed out.

But across the spectrum of his patients, Dorsainvil says, the biggest need is education. As treatment has improved in recent years, he sees fear of infection or of infecting others decreasing.

Abstinence as an answer

Education is where Malecki says she lately has seen the most inexplicable failure in fighting the epidemic.
With public funding for prevention efforts always minimal, she says, schools play a crucial role in protecting young people from becoming the next generation of HIV/AIDS patients.

But Palm Beach County public schools have yet to put a curriculum in place for high school students, and the program presented for sixth- and seventh-graders falls far short of "a comprehensive, fact-based approach," Malecki said.

The program tells how to wash a brassiere, prevent acne and avoid foot odor but gives scant space to sexually transmitted diseases.

The only prevention measure recommended there is abstinence, Malecki points out, although national studies have indicated that approach leaves teenagers no less likely to engage in sex, but more likely to do so without condoms.

Last spring she expressed her concerns to the school board.

In response, she received a letter saying the board planned to "convene a committee to develop a timeline," another delay, Malecki said. "The whole impetus to get appropriate health and wellness education into the schools was so important -- and it still is! It hasn't changed!"

Too little has changed in the 25 years since doctors began to recognize how the virus that was killing people in Palm Beach County was spreading, she says.

She appreciates that health officials acted quickly to test the blood supply. But then, she adds, it all fell apart, and a preventable disease continued to spread because officials ignored the most obvious risk: "It was a sexually transmitted disease."



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