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South Florida has Highest AIDS Rates in USA
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Affected communities in Palm Beach County highlighted in this article: Farm workers, Guatamalans, Haitians, Black men on the 'down-low'
Why is HIV continuing to spread in our community?
In Palm Beach County, 9,192 people have been diagnosed with AIDS from the beginning of the epidemic through March 31, 2004.
Between July 1, 1997, and March 31 of 2004, 3,747 people have been diagnosed with HIV in Palm Beach County.
In 2002, the most recent year available for data on metropolitan areas, the West Palm Beach to Boca Raton area ranked fifth in the nation for its rate of AIDS cases per 100,000 people.
According to the Palm Beach County Health Department, as of Dec. 31, 2003:
- 9,093 cases of AIDS have been reported in Palm Beach County.
- 8,875 cases are in adults.
- 218 cases are in children.
- 53 percent of all reported AIDS patients have died.
The top AIDS cities:
- New York City - 60.4
- Miami - 49.4
- Baton Rouge, La. - 49.5
- Baltimore - 48.7
- West Palm Beach/Boca Raton - 48.6
- Fort Lauderdale - 44.1
- New Orleans - 39.1
- Washington, D.C. - 35.4
Source: Florida Department of Health
AIDS in our community, Palm Beach County
LAKE WORTH
There is no word for 'virus' in the Mayan dialect spoken by many area immigrants.
WEST PALM/RIVIERA
Many pastors condemn homosexuality instead of handing out condoms.
BELLE GLADE
Made infamous by AIDS the year Rock Hudson died, but lessons weren't heeded.
DELRAY BEACH
While 2.5 percent of the county's population is Haitian-born, that number is 14.3 percent in the 33444 ZIP code.
Additional Post coverage
- Lives defined by secrecy, loss
- Vodou priestess called to heal
- How the county breaks down
By the numbers
- 21,293 of the county's 1,131,184 residents and city's 60,020 residents live in the 33444 ZIP code.
- 2.5 percent of the county population is listed as having been born in Haiti; 14.3 percent of the 33444 ZIP code is listed as Haitian-born.
- 2.8 percent of the county population speak Creole at home; 16.8 percent of the people living in the 33444 ZIP code speak Creole at home.
- 9.9 percent of the county's residents lived below the poverty level in 1999 while 19.5 percent of the residents living in the 33444 ZIP code lived below the poverty level.
- 25.3 percent of homes in the county are renter-occupied; 47.1 in the 33444 ZIP code and 68.3 percent in the "target area" are renter-occupied.
- 29.6 percent of families with children in the county are single-parent families, while 45 percent of those in the 33444 ZIP code are single-parent families and 39.5 percent of those in the "target area."
Source: U.S. 2000 census
HIV/AIDS patients to suffer sting of program cuts
By Antigone Barton
Palm Beach Post Staff Writer
Monday, March 20, 2006
DELRAY BEACH - Nearly 20 years after a doctor told him he had the virus that leads to AIDS, Jeff MacDonald is fit, cheerful, and stands before large groups to say HIV patients still can live good lives.
He credits his own life to the more than a dozen pills a day that he takes and to a wry but upbeat motto that he repeats with a laugh: "Once positive, always positive."
Recently, though, he found himself remembering the year he spent on a waiting list for help getting food and medicine, when he juggled a budget so finely balanced that the cost of driving to see a specialist meant missing a meal. Meeting friends was a luxury he couldn't afford.
It was an anxious, isolating, depressing time that ended when the Comprehensive AIDS Program assigned him a case manager to help him with what one social worker called "the full-time job of being HIV positive."
It was a time that was now four good years behind him, but a time he recalled again last week when he learned that Palm Beach County had been hit with its steepest loss of federal money for HIV/AIDS patients since the epidemic began more than a quarter-century ago.
The more than $1.2 million drop in funding for this year will cut food allowances to patients by 75 percent and nearly halve the amount of money available to help patients with legal services.
CAP, the larger of two nonprofit organizations in Palm Beach County to receive the federal money, has estimated the cut will leave about 600 HIV patients without dependable transportation to their doctors, take groceries from about 800 patients and force about 400 to navigate a maze of medical and social services on their own.
MacDonald, like others familiar with the support HIV/AIDS patients need, believes the cutbacks will also, ultimately, cost patients their access to lifesaving medical care.
"What are they thinking?" MacDonald said.
Finally, reason for cut given
The answer to why the county lost 13 percent of its HIV/AIDS funding remained a mystery for two weeks after the cut was announced.
Late last week, federal officials delivered the answer in an evaluation of the county's grant application for the money.
The evaluation noted that portions of the application were unsupported, inconsistent and unclear. It also said that the application did not adequately address the barriers to social and health services for Haitian and African-American patients. It also fell short in dealing with barriers confronting patients living in the hard-hit Glades region, where transportation problems were described in just one sentence.
The evaluation also says the county did not propose sufficient remedies for those problems and did not provide a plan to encourage people living with AIDS to remain under medical care.
The application was prepared by the county's Department of Community Services, where director Ed Rich said Friday he would use the feedback to improve future applications. He also said he would investigate appealing the decrease.
"I really want to check into the appeal process, because $1.2 million is a lot of money," he said.
Nearly every other applicant did better. Palm Beach County lost a larger percentage of federal money than any other metropolitan area in Florida. Of the 51 U.S. metropolitan areas that receive the money, only San Antonio got a larger reduction.
Although two other Florida metro areas also received less money than the year before - Jacksonville and Miami got roughly 2 percent cuts - the other three Florida metro areas eligible for the money got increases: Orlando, 7.5 percent, Tampa Bay, more than 4 percent; and Fort Lauderdale, more than 2 percent. Eight other areas across the country received raises. To be sure, funding decreases can be spurred by a drop in AIDS cases. But that's not the case in Palm Beach County, where an estimated one of every 131 people is living with HIV/AIDS.
Disease hits poor hardest
The 1992 congressional act granting federal money for HIV and AIDS patients was named in memory of Ryan White, the Indiana teenager who was barred from attending school after he contracted the virus from a blood transfusion. Its primary use is to ensure that HIV and AIDS patients have access to medical care, an increasingly complicated proposition as the disease continues to disproportionately hit some of the country's poorest.
This is particularly true in Palm Beach County where, from the mid-1980s, the epidemic has disproportionately affected poor and minority people, a trend since repeated across the nation. Here, about 75 percent of clients receiving case management from the Comprehensive AIDS Program live below the poverty line.
"We have clients who come in the door who have no income, no insurance and an immediate need for food. How are you going to say no to them? Is someone who doesn't have food on the table going to be committed to going to the doctor?" asked Stephanie Moreau of the Delray Beach office of the Comprehensive AIDS Program. "Is someone who doesn't have transportation going to be able to get to the doctor?"
One of her office's clients is Mary, now a working mother of a healthy toddler, but who was pregnant, alone, new to the United States and terrified when, a little more than two years ago, an obstetrician told her she was infected with HIV.
"My mind stopped working right," said Mary, who does not want her real name used. "I couldn't sleep at all. I used to look at the clock until 5 a.m. I used to pray that I could go to sleep and not wake up. I used to look for a space to cry, all the time."
She comes from a middle-class family in a country where the disease is endemic and nearly always fatal. She hasn't even told her mother, who is a nurse, that she is infected.
"I wish I just had cancer," she said.
A social worker immediately began to call her and leave messages, which, paralyzed with dread and panic, Mary didn't return. Then the social worker appeared at her door.
"She told me, 'We have to save your baby's life.' " Mary began to take medicine, but the cash she had saved for after the baby's birth was being consumed by doctor visits and cab fare to their offices. Eventually, she found her way to CAP, where a caseworker told her that she could get help to pay rent on a decent apartment and with food and transportation to doctors.
"I was being treated like other people," she said.
Taking charity bothered her: "I always thought of myself as a strong woman who could do everything." But she said, the help she got made her stronger, and now she is working again.
Someday, she said, she will be strong enough to go back to her country.
"I will have a long story to tell. People in my country say the U.S. doesn't care. But they do care. They save people like me. If they didn't care, they wouldn't do it."
Eight caseworkers must go
Although local health planners vow they will continue to try to save people like Mary, they say they will have to do it with fewer resources. Eight of the 52 caseworkers at CAP will lose their jobs as a result of the cuts. Compass, the other organization to receive Ryan White money, will not fill an open caseworker position.
Waiting lists for their services, like the one Jeff MacDonald remained on for a year, will be longer, and the length of time patients can regularly see a caseworker will be limited to three months. Patients who need mental-health counseling will be limited to six months of therapy, and in-patient substance-abuse treatment will be shortened from six months to 90 days.
In his mid-40s, Tom is another CAP client who doesn't want his real name used, because he lives with his mother in a retirement community. By the time he was diagnosed with full-blown AIDS in 1998, his adult life already had been consumed by depression, alcoholism and drug use. That's why he got infected, he said: "It's kind of hard to know what's going on when you don't get off your bar stool."
He has seen a therapist for the last two years and says he has remained sober.
"I don't know how many times she's saved my life," he said. Last week, however, he learned that the money paying for his therapy will disappear in six months.
"I can't wait to see what happens then," he said. "So many people with AIDS have the alcohol and drug problem. There are so many people with different problems out there, and the only thing the government can think to do is spend less money on them."
MacDonald, diagnosed in 1985 with a disease he had never heard of and that he was told would kill him within a year, doesn't try to predict the future.
But he wonders what priorities direct policymakers as they confront the epidemic's third decade.
"They've got political careers, and their families and golf courses," he said. "I'm not knocking that. There's nothing wrong with having nice things. It's just when they become more important than..."
He stopped and a half minute passed while he searched for the right word.
"Than life," he concluded.
Black Men on the 'down-low' in Palm Beach County-PHOBIAS, STIGMAS HINDER AIDS FIGHT
By ANTIGONE BARTON
Palm Beach Post Staff Writer
Sunday, November 14, 2004
33401, 33404, 33407
Riviera Beach and West Palm
These three ZIP codes form a contiguous area that battles prostitution and 'down-low' sex.
The Rev. Lewis White's old red school bus bears the unusual combination of bright yellow praises to God and black condom-shaped bumper stickers that say "Just use it."
When it pulls up to the corner of 13th Street and Tamarind Avenue, it doesn't draw a stare. It has been here before, and it keeps coming back. Caroline Williams opens the back of the bus and hauls out a deep fryer. She has worked for White at the United Deliverance Community Resource Center the past five years, and if tonight is like other nights, she expects as many as 25 people, lured by the scent of sizzling chicken, to board the bus for an HIV test.
She expects 15 to return in two weeks to find out whether they have the virus that leads to AIDS. Five are likely to find out they do.
The bus will be back on this corner in a few weeks, and those numbers will multiply. In between, the bus will stop on other corners - in West Palm Beach, Riviera Beach, Delray Beach, Belle Glade. It will go to all the places where the numbers of new HIV and AIDS patients are the highest in a county that has one of the steepest AIDS rates in the nation.
Still, about one-third of the estimated 10,000 people infected with HIV in this county don't know it, says Treasure Coast Health Council Planner Karen Dodge.
Many, too, don't know the risks they face, say health advocates increasingly concerned about a phenomenon that residents are reluctant to discuss: men who have sex "on the down low" with men while denying that they are gay or bisexual. These men also have sex with women, and pretending to be monogamous, they are unlikely to use condoms with any of their partners. The phenomenon is one reason that black women and girls make up the fastest-growing group of new HIV patients, health researchers say.
As the sun dips behind the office buildings off Palm Beach Lakes Boulevard, the aroma of frying chicken begins to draw the hungry.
"Some of these people don't eat unless we feed them," Williams says.
A man lurches across the street, his gaze fixed as he reaches into his filthy shorts to tug at tattered underwear. A flattened, unlit cigarette butt hangs from his lips. He asks for money.
Williams tells him she never brings money but offers him a free HIV test.
He doesn't need it - he already knows he is infected. He says he's being treated, but Williams doesn't believe him.
She knows what life here is like because she lives nearby.
Williams asks a woman who comes to the table whether it's time to get tested again.
The woman gazes at her fingers, folding them down as she counts.
"It's been four months," she says.
"It's time," Williams says firmly. "Every three months."
The Rev. Lewis White and his wife, Sandra, started their HIV testing campaign in tents from an Army-Navy surplus store. They mortgaged their house in 1999 to raise $5,000 to buy the old school bus.
White laughs when he recalls telling the seller he didn't care that the bus had only four seats. Today, the bus is outfitted with four booths enclosed by shower curtains, where staff members test people in privacy.
He decided early to include food.
"First, we show that we care," he says. "We overcome one step at a time."
He got support with small donations from Bristol Myers Squibb, which manufactures AIDS-fighting drugs, then larger grants from the Centers for Disease Control and Prevention.
But, he says, he also has gotten "a lot of heat" from other pastors for his frank talk and distribution of condoms.
That doesn't bother White as much as the tragedies that have unfolded in front of him.
"The hardest time was going to tell a 13-year-old child she's HIV positive," he says. "Her mother put her out. She ended up in a house with a man."
Another little girl told him she'd been having sex since she was 7.
He also has spoken to "bug chasers," young people so devoid of hope they deliberately expose themselves to the disease. Their reasoning, he says, is: "If I catch it, I get a check, I get a place to stay, I won't have to do anything. They'll take care of me."
He tells about women who say they sleep with infected men because they're in love.
"That ain't no reason to die," the pastor says.
Williams, whose workday began 12 hours ago, calls out to passersby as she watches the chicken in the deep fryer.
"Free testing, no needles, free condoms."
On the bus, curtains are drawn in three booths. A man comes out of a booth insisting he doesn't need the condoms one worker offers.
It was his first HIV test, the man says.
"I know I'm OK. If I ain't, she must have been cheating. I'm going to go back and kill her."
He laughs as he says this.
"There are still a great number of people who don't know how you get it," White says.
Those who deny their risky behavior pose the biggest challenge, though.
"The hardest group to reach is black men having sex 'on the down low.' They will not admit it," White says.
It is a long-standing issue in black communities, where cultural condemnation of homosexuality pushes gay men into lives of secrecy and risky behavior, those active in fighting AIDS say.
Researchers say that men who feel compelled to conceal their sexuality are part of the equation that has made AIDS the leading killer of black women and men between 25 and 44, and a reason that black women account for nearly half of all AIDS patients exposed to the virus through heterosexual sex.
White places part of the blame for that on his fellow pastors.
"How are you going to reach people if they're being pushed out? As a pastor as I came up, the church taught homosexuality is a sin. Now, when I step out, I don't see homosexual or lesbian."
A year ago, he had a pancake breakfast for other black pastors to encourage them to get involved in the fight against AIDS and exhibit more tolerant attitudes. He invited about 20 pastors. The breakfast attracted about two dozen people but only two other pastors.
One of the no-shows was Bishop Harold Calvin Ray, a lawyer turned minister whose Redemptive Life Fellowship Church lies in a West Palm Beach neighborhood with the highest number of new HIV cases in the county last year. Outspoken in his condemnation of homosexuality, he is an avid backer of President Bush's faith-based initiative and recently received a $2.1 million grant to help other local black churches get aid from the president's "Compassionate Capital Fund." Ray did not return calls for this story.
Bishop Thomas Masters also stayed away. Active in other issues affecting his Riviera Beach parishioners, he says churches should fight AIDS, but he maintains homosexuality "is an abomination under God."
"We have a lot of work to do in formulating a message," says Elizabeth Robinson, a regional AIDS coordinator for Palm Beach County and the Treasure Coast.
Messages developed in the beginning of the epidemic were developed for gay men - a population, she says, more open to frank discussions about sex.
"People in minority communities don't talk about sex," she says.
She cites what she sees as a common problem: teenage girls who preserve their virginity by restricting intimate activities to anal and oral sex and do not believe they are doing anything risky.
Prevention efforts will be most successful, she says, when all groups that can help - schools, social-service agencies and health-care providers - work together. She describes an approach like a military battle plan, methodically tackling one area of the county at a time with AIDS education, testing and counseling. Recently, she bought a map at the elections office to plot her attack.
She concedes one problem: Prevention programs seldom get long-term funding.
Last year, COMPASS, a gay and lesbian advocacy organization that fights AIDS, received an $80,000 state grant to launch a support group for gay black men. It spread word of the group to churches and gay bars and hired a gay black man as a group leader.
The group grew until it drew about 25 regular attendees. When the grant ended, though, so did the staff member's job. With no outreach efforts and an Asian volunteer leading the group, attendance flagged.
COMPASS now is working to get prevention messages to women, deputy director Nancy Zemina says.
"You can point to men having sex on the down low and blame them for the disease, but actually everyone has to take care of themselves. Philosophically, we're all alone in this world."
In the last daylight, a gaunt woman and a stocky man leaning on a crutch pass the bus.
"Free HIV testing, no needles, confidential results," Williams calls after them.
The man doesn't pause, but the woman looks back at the table.
"Free chicken sandwich," Williams adds. "Would you like a chicken sandwich?"
"I would love a chicken sandwich," the woman says, stopping. The man keeps walking, and she runs to catch up. The two talk and the woman calls back to Williams that she can't stop after all; she has to help the man carry groceries.
The street is dark when she returns alone and boards the bus.
AIDS HAUNTS IMMIGRANT LIFE, Guatamalans in Palm Beach County
By ANTIGONE BARTON
Palm Beach Post Staff Writer
Sunday, November 14, 2004
33460 Lake Worth
This ZIP has the county's largest number of Guatemalan-born residents. Many speak neither English nor Spanish, but one of 22 Mayan dialects.
On a pie chart, Palm Beach County's AIDS patients are black, white and Hispanic.
The chart doesn't look complete, though, to Sister Rachel Sena, who has worked with Mayan people here for the past 10 years.
"This is very good news for the Mayan community. No one is infected," she says dryly and sighs. "How typical of Native American reality - ignored."
The local Mayan Guatemalan population she serves is concentrated in one the county's AIDS/HIV hot spots: the 33460 ZIP code in Lake Worth. The neighborhood has one of the highest rates of new HIV and AIDS cases in the county, with 33 new HIV patients and 29 new AIDS patients in 2003.
"I have been there when a woman learned she has AIDS. I have been there when she's chosen to go back to Guatemala and die," Sena says. "I have been there when her husband stayed here and died. We know what it is to have death threats, and this is a death threat."
Many Mayans came to Lake Worth to escape the U.S.-backed death squads that ravaged their villages during Guatemala's 20-year civil war. In the beginning, most were men who left their villages to build lives here, working long hours, sharing crowded apartments with fellow refugees and turning to prostitutes for sex.
When they saved enough from their wages, the men brought their families here or visited home. Some, now infected with HIV, unknowingly spread the disease to their wives. Illiterate, they remained unaware of the danger that spread through their community.
The irony is that these people who fled their homeland to escape genocide now face the same danger here, Sena says.
"Unknowing, self-genocide."
Maria is one of those who fled the war. She and her husband left Guatemala City 12 years ago and found work in the local fruit and vegetable fields. She can't work anymore.
She knows, although she doesn't want to say it, that she got the HIV virus from her husband, who is sick, too. He's a "playboy," she says, smiling sadly. Her husband is the only person who knows about her illness. Her eyes brim when she says she would be despised if others knew.
She went to the Comprehensive AIDS Program in Palm Springs soon after she tried to fill prescriptions from the doctor who diagnosed her. The $3,000 tab her pharmacist presented her sent Maria running back to the doctor, who referred her to the health department, which in turn directed her to CAP to find money for her medicine.
"I would be dead now," she says in Spanish, "if it weren't for CAP."
That is not an overstatement in the experience of her caseworker, Winston Maldonado.
When Maldonado talks about the people he has seen lose their lives to AIDS, his stories sound as if they come from another era - before doctors learned to manage the disease with drug "cocktails." There was the 17-year-old boy two years ago who returned to Guatemala and died; the 70-year-old man who died last year; the 29-year-old man who slipped away "almost in my arms" in November, and haunts Maldonado still.
"Too young. We're losing a generation of people. We're thinking we're winning this war?"
Maldonado, a CAP senior caseworker who came here from the Dominican Republic, says survival is complicated for Central American immigrants.
"We don't go to the doctor unless we're dying. That's part of the culture," he says.
"If they get fired, what do they do? They can't go on unemployment, or file a suit. Which would you rather do: Have a job, have some money in your pocket, or take some pills?"
One of Maldonado's clients, a man named Andres, was relatively lucky. Six months ago, a blistering rash on one side of his neck and a fist-sized growth on the other sent him to a doctor in time.
Andres came here to support his family, but now they support him.
"I can't get married now. I can't have children," he says.
Sometimes, he thinks about dying. CAP referred him to a psychotherapist for help dealing with his sadness.
At first he says he doesn't know how he got the disease.
"Una mujer? (A woman?)" Maldonado asks, "Un hombre? (A man?)"
"Una mujer," Andres answers firmly. He smiles sheepishly as he admits to consorting with las viejas (the old women), which is slang for prostitutes.
He used condoms sometimes to avoid catching the curable venereal diseases he knew about, but sometimes he didn't. He never thought he could catch HIV, an illness he had heard of but knew nothing about.
His family knows he is sick, but he hasn't told them what he has. He has not warned his teenage brother about the dangers of sex without a condom.
In any case, there is no word for "virus" in Kanjobal, his native language.
Sena worked five years as a Catholic missionary among the Mayan people in Guatemala. She knows more about Mayan people than most in the neighborhood.
As an example of how little local officials know of Mayan immigrants here, Sena points to the case of Mayan teenager Petrona Tomas, who was charged with murder in the death of her newborn baby after police interrogated her in Spanish, a language she did not understand. Court appearances then were delayed while court officials sought interpreters who spoke Kanjobal, her native language. Tomas was freed in July after charges against her were reduced to child neglect.
The case highlighted what Americans don't know about Mayan people and what Mayans don't know about life here, Sena says.
Last spring, Sena was awarded a $52,000 grant to educate the Mayan community about AIDS.
First, she says, "We want to know how much the Mayan community knows. Nobody's done that research."
She hired Maria Cristina Acosta, a health educator from Cuba, to train leaders in the community who will tell others what they have learned. The remaining grant money will go to stipends for those leaders and for office supplies. With an ancient culture centered on family, town life and oral tradition, "they have the capacity to be healers amongst themselves," Sena says.
They can do that best in their own settings, she says, arguing that AIDS educators can't be only those who "wear suits, come between 9 and 5 and can read and write."
Instead, Sena arranged an after-work evening of tostadas, drinks and talk at the Lake Worth home of Juana and Pedro, a respected couple in their community. Guests filled their tidy living room, with Americanized teenagers sharing sofas with their work-weary, Spanish-speaking parents.
The food and drinks came first, in a gathering as loose and warm as a family get-together.
The focus of the evening, though, was life and death.
"If you don't know your way in the desert, you die," Sena says. "You need a guide." It is a harrowing analogy to people who walked through the desert between Mexico and the American Southwest to get here.
The informal setting allows Acosta to talk through a Spanish-language video on AIDS, explaining unfamiliar terms while the guests comment to each other as well.
"This is important for the young people to know," says a man with a deeply lined face.
"It's important for you to know," Sena says, explaining people who work with their hands need to know how to protect themselves from contact with blood.
"The virus is in the streets," Sena warns. "The virus will knock on the door and say, 'Who wants AIDS?' "
"I would say, 'No, no, no,' " Juana calls out.
Sena gathers the group in a circle to end the evening with a prayer. She gives a candle to the youngest, a girl of 15 who shields the flame from the air conditioner.
"The young are our future," Sena says. "Try to keep the flame alive."
HAITIAN CULTURE POSES CHALLENGES TO TREATING, PREVENTING DISEASE in Palm Beach County; 7% of HIV+ in Florida are Haitian
By ANTIGONE BARTON
Palm Beach Post Staff Writer
Sunday, November 14, 2004
Stigmatized since the beginning of the AIDS epidemic, many Haitians saw AIDS as a hoax and rely on Vodou faith.
About a half-mile south of Atlantic Avenue's sidewalk cafes, a grandmother lives in a brightly painted house with flowers in the garden, bars on the windows and a secret.
The grandmother, who is in her early 60s, has a wry smile and a thick Creole accent. She has kept her secret while working her cleaning job, raising her youngest child into adulthood and going to church most Sundays for the past five years.
Most of that time, she also has seen her doctor every three months and taken 10 pills a day. When a bureaucratic glitch kept her from getting the pills, she lost 20 pounds in less than two months.
Still, most of the people she sees every day don't know she is infected with the virus that leads to AIDS.
Keeping this to herself is easier than the alternative, she says: "HIV is bad enough. The questions people ask would make me sicker than I am."
The grandmother is not alone, though.
She lives in the 33444 ZIP code in this award-winning All-America city, which more new HIV and AIDS patients call home than any other in the county.
Palm Beach County itself ranked fifth in the nation last year for its rate of AIDS cases, with an estimated 45.1 patients per 100,000 people.
Those numbers and others like them in ethnically diverse areas prompted studies in recent years to see whether the federal government was doing enough to get AIDS prevention messages to members of minority groups.
Like 7 percent of Florida's HIV and AIDS patients, the grandmother was born in Haiti.
Three years ago, researchers came to the grandmother's tidy neighborhood to learn what put residents there at risk for the virus. They found shopping strips resembling those in a Caribbean village and Vodou - the accepted spelling of the religion, often Americanized as Voodoo - "healers" who charged thousands of dollars to remove the "hex" of AIDS.
Faith in the healing powers of the Haitian religion of Vodou (pronounced VOE-due) was one element in a lethal mix of cultural isolation, poverty and crime that made the area a critical target in the fight against HIV, according to a report presented to county commissioners in 2001.
Adding to that mix has been a flow of immigrants from the Caribbean Basin where HIV/AIDS rates are second only to Africa, says Treasure Coast Health Council Planner Karen Dodge, who headed the research team.
Three years after the report - it also examined areas of Belle Glade, Lake Worth and Riviera Beach - the county continues to see the numbers of people living with HIV and AIDS grow among the educated and elderly, as well as the young and poor. For each of those years, the 33444 ZIP code in Delray Beach yielded the highest numbers of new HIV and AIDS cases.
The Delray Beach office of the Comprehensive AIDS Program serves about 500 HIV and AIDS patients. About 135 are Haitian immigrants, many speaking only Creole.
The Caribbean village that Dodge and her fellow researchers described in their 2001 report isn't the pastel-painted paradise depicted in tourist brochures. The business strips they found recall village life on money-strapped islands, where concrete-block buildings house supermarkets, drug stores, beauty supply shops and vendors offering island music and long-distance telephone services.
Behind a narrow storefront billing itself as "Community Social Help Foundation," a man said he offered counseling, tutoring and mentoring. He would send anyone with questions about AIDS to Dr. Serge Alexandre.
Alexandre is one of just two Haitian-born doctors in the county who focus on AIDS patients.
Every month, he sees about 200 HIV patients.
He is fluent in Creole. Diplomas and certificates share wall space with Haitian art in his office. He wishes more Haitian doctors would focus on AIDS.
"You can't educate patients if you can't communicate," he says.
He remembers the early years of the AIDS epidemic, when being Haitian-born was one of the Centers for Disease Control and Prevention's "risk categories," which also included homosexual men, hemophiliacs and intravenous drug users.
"If you had a diagnosis of AIDS, the American doctors would ask, 'Are you a homosexual?' No Haitian will admit to that - homosexuality is taboo. They would ask if you have ever shared a needle, meaning are you an intravenous drug user. The Haitian would say no. But if they had asked, 'Have you ever received an injection in Haiti?' - which is the equivalent of sharing a needle - they would have gotten a meaningful answer.
"But because they didn't understand the Haitian culture, they asked the wrong questions. And because the Haitians didn't fit into any of the existing risk groups, they created a new one for them."
The designation was lifted in 1985, when CDC officials realized there was no connection between being born in Haiti and contracting AIDS. Adding to the confusion, though, federal officials directed blood banks in 1990 to turn down donations from anyone who had lived in Haiti. This prompted some in the Haitian community to buy time on Creole radio stations to claim that AIDS was a hoax.
Looking at the floor, the 38-year-old woman says flatly she doesn't know how she got the virus.
Alexandre suggests she was infected through a blood transfusion when she bore her second child in Haiti, 19 years ago. That was common then, he says.
The patient shrugs. It doesn't matter now, because she no longer believes she is sick.
A year after her diagnosis, a voice in a dream told her that soon someone would present her with a cure. When that didn't happen, she continued to take the medicine her doctor at the clinic gave her and to pray for the promised cure.
Then, six months ago, a "sister" at her church, a woman she barely knows, approached her with a bottle of liquid. She had been instructed in a dream to prepare this concoction and present it to her, the patient says.
The patient drank the liquid during the next seven days. Then she threw away her pills.
"I will never take them again," she says, raising her deep voice with some impatience.
That worries Alexandre; without the medication, the virus mutates and becomes harder to treat with the next round of drugs.
Her viral load and t-cell count remain good, though, he concedes.
Much more troubling, he says, is that the patient also has stopped using condoms with her husband.
"Why should I?" she says angrily. "I'm not sick."
Alexandre credits one thing for his rapport with his patients: "I never criticize anything."
That goes for patients who believe in Christian faith-healing and those who believe a Vodou priest can remove the hex of HIV.
"If you understand the role of a rabbi, the role of a pastor, you understand the role of a Vodou priest," he says. "If you deny them access to a Vodou priest, you deny them access to hope."
Without that hope, he concludes, a patient won't listen.
There is no medical benefit to Vodou, though.
"Zero," he says. "That's how a lot of people die."
At 33, the patient is a pretty, matronly woman who wears her long hair in braids coiled around her head.
Her eyes are red-rimmed. She keeps her face down and her voice low.
She has been an HIV patient for two years, a widow for two and a half. Her husband was diagnosed with AIDS three years ago but never treated. Instead, he returned to Haiti, seeking a Vodou cure. He died there six months later.
He was 37, she says, raising her face to hold back tears.
A while back, a Vodou priestess who is a patient at his private practice told Alexandre that she probably treated more HIV patients than he did.
"They would pay her $1,000, but they wouldn't pay me $50," he says. "I opened a partnership with this lady."
Tell your patients whatever you want, he told her. Take their money. "But at least tell them the spirit wants them to see the doctor."
She has sent about a dozen patients to him, he says.
"Every HIV group has a different culture," Alexandre says. "That's part of the HIV problem. When they don't believe you, they keep having unsafe sex. Once the Vodou priest tells them to use a condom, they will use a condom."
The relationship gives the priestess something to offer patients who don't respond to her "treatment," while allowing her to remain in the picture, he says.
There is some basis, he says, for the belief that Vodou practitioners have cured AIDS.
The belief goes back to the beginning of the epidemic when AIDS diagnoses were based solely on patients' symptoms. In Haiti, where parasites and bacteria plague the water supply, uncontrollable diarrhea often led to an incorrect AIDS diagnosis. Patients who were not sick with AIDS got relief from herbal remedies supplied by Vodou practitioners, who then were credited with curing the disease.
Many Vodou practitioners are principled and don't lay claim to powers they don't have, Alexandre adds.
Either way, he says, religious leaders are the most powerful allies he has in fighting AIDS in the Haitian community. "Unless you open a partnership with this leadership, you'll never get anywhere, trust me."
It is a slightly veiled reproof of local Haitian organizations, which, he says, have failed to provide leadership.
Amid charges of nepotism, corruption and incompetence, a succession of directors have left the Haitian Center for Family Services, one of three organizations in the county that receives federal "Ryan White" money to help people with HIV and AIDS.
At the Haitian American Community Council, another local organization that has received county dollars to help HIV patients, director Daniella Henry was investigated last year for directing clients to properties a relative owned in a housing program she ran for AIDS patients.
Little in the waiting room of either organization indicates the groups serve people grappling with HIV, although Henry said she kept condoms in a back office, in a carton under a folder behind a desk. Henry, who has since left her position, said HIV is just one of a host of problems faced by the immigrant population the organization is intended to serve.
Crime is one of those problems, noted the researchers who found thriving drug and sex businesses in the midst of well-kept homes, sometimes operating out of convenience stores.
Annette Murzike Dunn spent years on these streets, trading sex for money and drugs to feed her addiction.
"I used to work these houses and do the whole house. Everyone in the house caught it."
She discovered she had HIV when she was eight months pregnant. The weekend after her diagnosis, she tried to kill herself with alcohol and drugs. When her efforts failed, she was directed to a series of addiction recovery programs. The third one, which lasted six months, worked.
Now an outreach worker for the Treasure Coast Health Council, Murzike Dunn speaks unflinchingly of her former life. Recently, she returned to those familiar streets to gather information about HIV-infected women who are not receiving treatment. She found women she remembered, still living the life she escaped.
"Some of them are still out there; most are dead, it hurt my heart."
In 2000, the area north of West Atlantic received federal Weed and Seed money to help community organizations clean up crime.
But the Haitian neighborhood to the south, where Murzike Dunn recalls working in commercial sex houses that served dozens of men a night, has gone without federal money. This year Weed and Seed staff are requesting another grant for that neighborhood.
The grandmother in the brightly painted house south of Atlantic Avenue watched her weight drop from 135 to 92 pounds in 1999.
That is how she eventually found out her husband of 29 years had been having sex with a prostitute who lived and worked in their neighborhood.
That, also, is how her secret began.
EPIDEMIC GRIPS CITY UNDER MICROSCOPE, Belle Glade, Palm Beach County
By ANTIGONE BARTON
Palm Beach Post Staff Writer
Sunday, November 14, 2004
Here the median household income is $22,000, less than half of Palm Beach County's median, which was $45,062 in 2000.
Sandra Chamblee remembers the hospital meeting in 1981 when a nurse described the mysterious condition of an emergency-room patient whose immune system had disintegrated. The patient died a few days after the meeting but lingers in Chamblee's mind when she talks about the beginning of the AIDS epidemic in her city. He was the first AIDS patient Chamblee knew of.
She later learned he was one of a series of patients that year to arrive at Glades General Hospital with pneumonia that didn't respond to treatment, prompting doctors to contact the Centers for Disease Control and Prevention.
Chamblee now heads the Glades Health Initiative, one of three organizations in the county that gets CDC money to fight AIDS.
Recently, her organization received a five-year grant to carry out the government's latest approach to AIDS prevention, one that emphasizes testing and counseling those infected. Health-care advocates laud the intent but say it falls short of addressing problems in communities such as Belle Glade, where the numbers of new HIV and AIDS cases are among the county's highest.
Last year, 31 people in Belle Glade were diagnosed with HIV. An additional 45 learned they have AIDS, a condition increasingly considered by health officials to reflect a late HIV diagnosis and limited access to treatment.
The calls doctors made to the CDC in 1981 received little attention. Not until 1985 were federal researchers drawn to the isolated farming community by an alarming hypothesis that mosquitoes could be transmitting AIDS.
That year was a turning point in the AIDS epidemic, with news that actor Rock Hudson was infected and that a 13-year-old patient named Ryan White had been barred from his school. Both events drew mention from President Ronald Reagan, who had given no previous public recognition of the epidemic. But although the plights of Hudson and White generated heightened awareness of AIDS, the lessons Belle Glade offered yielded little progress in the fight against the disease.
When researchers came to Belle Glade in 1985, the city's rate of one AIDS case for every 541 people was 51 times the national average.
Each year, an estimated 40,000 new HIV infections occur in the United States.
As of 2002, one in 131 people is presumed to be infected with HIV in Palm Beach County and one in 168 is presumed to be infected with the virus in Florida. Nationwide, one study has estimated one in 333 Americans is living with HIV.
Two decades ago, researchers found that about half of Belle Glade's AIDS patients were women, although women across the nation made up a small percentage of AIDS cases. Now the CDC estimates that the national male-to-female ratio is even among 13- to 19-year-olds.
Although Belle Glade forecast the course of the epidemic, a research center the CDC opened in 1986 closed in 1996 under pressure from residents who said they were tired of being treated as guinea pigs. When asked this year what was learned from a decade of research in Belle Glade, a CDC official replied that "the learning lesson" was that mosquitoes don't spread the virus.
The crumbling tenement slums that researchers saw in the 1980s have decayed further in the years since. The agriculture-based economy has, with mechanization, become an even less reliable source of income for the local poor. The hospital that treated the area's first AIDS patients now also serves neighboring Pahokee; the hospital there closed in 1998. Plans to use the empty building for AIDS research never materialized.
Though charities supported by Hudson's Hollywood friends fueled research that improved care for HIV patients, many in Belle Glade remain strangers to health care, living without insurance and getting their medical care in the emergency room.
And although the Ryan White Care Act established a federal fund to care for AIDS patients in memory of the boy who overcame discrimination, Belle Glade remains haunted by the stigma of that summer.
"I'm kind of tired of hearing about Belle Glade," says Dr. Betty Baker, medical education director for the county health department in Belle Glade. "When you talk about Belle Glade and AIDS, you reopen old wounds. I don't care if you dress it up or dress it down, it's still a wound."
For that reason, she does not want to discuss why, after all the scrutiny the town's AIDS patients received, the disease continues to flourish here. "The question is not why the numbers are going up in some areas. The question is why the numbers are still going up, period. Are we failing in our teaching?"
The answer is yes, according to a coalition of AIDS organizations nationwide. In 2002, the group issued a dismal report card to the Bush administration for its response to the AIDS crisis, noting it had "attacked comprehensive, locally tailored HIV prevention programs." The group gave the administration a "D-minus" for its performance on the Minority HIV AIDS Initiative, a congressional measure targeting deficiencies in services offered to minority communities.
Matters have improved little since, according to those active in HIV prevention.
"If anything, they've gotten worse," says Mark McLaurin, HIV prevention director for the Gay Men's Health Crisis. McLaurin also heads a coalition of national HIV/AIDS prevention policy organizations. Since that report card, fewer community-based organizations are getting federal dollars for prevention, he says.
He joins critics of federal prevention policy that focuses on medical settings, pointing out those at risk for HIV have the most tenuous access to health care.
Belle Glade's unemployment runs close to 18 percent. Hundreds of farmworkers in the city are ineligible for Medicaid as well as unlikely to confront a harrowing bureaucratic maze for care they are not accustomed to in their native lands.
Researchers who visited Belle Glade in 2001 found residents with HIV and AIDS reluctant to visit the public health clinic where staff members also were neighbors. Some traveled to the health department's Riviera Beach center, but undocumented immigrants shied away from the clinic, which until recently was one door away from an Immigration and Naturalization Service office. About 60 percent of the patients who are admitted to Glades General Hospital arrive through the emergency room. That is how almost all of the hospital's HIV patients arrive, many with full-blown AIDS. They arrive with seizures, deafness and blazing fevers.
Researchers and community leaders examining HIV transmission in Belle Glade have repeatedly identified the "loading ramp" as an open-air sex and drug market.
A dusty quadrangle where buses and vans arrive to take workers to day labor, the loading ramp is about the size of a city block and is surrounded by squalid, dilapidated two- and three-story tenements.
In the white heat of midday, a handful of men sit on each corner. One group watches passing cars. One man sitting alone across the street counts a thick fistful of bills. A girl of about 12 rounds a corner, arms swinging, her tight, faded blouse and skimpy shorts collecting stares from the men.
This spot is home to most of the patients who receive services from the Comprehensive AIDS Program's Belle Glade office, regional manager Marie Presmy says.
The area has changed little since the early 1980s, when Dr. Mark Whiteside and Dr. Carolyn MacLeod arrived in Belle Glade.
The first to study AIDS in the city, they theorized that the close quarters and foul sanitation fostered the disease. Noting that miserable housing sent residents onto the street in the evenings, the doctors suggested that multiple mosquito bites over an extended period played a role in transmitting AIDS.
The idea prompted school bands and athletic teams to stay away, out-of-town job applicants to withdraw their names and travelers to give the city a wide berth.
Their point was misinterpreted, Whiteside says, adding he never discounted that the disease was sexually transmitted. "I accept the usual risk factors," he says, but, "I can tell you in total confidence that if in these areas you don't make improvements in basic living conditions, you won't do anything about the disease."
During the years since his visit, the city has received no federal help to counter crime, deterioration and poverty. That's about to change with the area's first Weed and Seed grant, part of a national program to improve blighted neighborhoods that has shown results in Delray Beach, West Palm Beach and Riviera Beach.
The Belle Glade office of the Comprehensive AIDS Program is a short walk from the loading ramp but has no sign.
"The biggest challenge here in the Glades is the stigma," Presmy says. "We have clients who won't come here for services. We have to meet them at the library."
The center has about 600 clients in its computer database. Only half are continuing clients, and that varies by season because many are migrant workers who travel to Georgia to pick peaches, then all the way to Maine to pick blueberries, Presmy says. During the first month of that trek, they run out of medication. "They come back very, very sick."
Patients who remain in the city deal with the limitations of life in Belle Glade.
Although a 12-bed facility for drug-addicted pregnant women continues to operate, in-patient rehabilitation for men closed in the mid-'90s. Jobs that provide a living wage and housing that meets code are scarce.
In such an environment, protecting oneself against HIV becomes a low priority, Presmy says.
"If they need lights and water, they don't care about HIV prevention. If they have to find a guy who's going to pay their light bill, pay their rent, they will do what they have to do."
Shirley Taylor caught the virus 11 years ago when she was using drugs. She doesn't do drugs anymore and says she is celibate.
She is 46 now and takes care of her brother, who is paralyzed from a gunshot wound.
She doesn't care who knows she is HIV positive.
"I got nothing to hide," she says. "Some people got worse than that."
She has another brother who also is HIV positive.
About a year ago, Taylor mentioned her doctor while talking to a friend she has known since seventh grade and learned her friend was seeing the same doctor.
"March 22, 1993, I was diagnosed," says her friend Gloria, 43. "This is the only disease I ever had. I never had clap, never had syphilis."
She can't work anymore.
"A lot of times my bones ache," she says. But she doesn't know if that's from the illness or from years of crawling in the fields, cutting lettuce.
Still, she says she is doing well.
"The first year was hard. It don't faze me no more."
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