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by Val Ellicott
Staff Writer
In February 1986, a small group of researchers
began knocking on doors in ramshackle apartment buildings and squalid
rooming houses scattered through Belle Glade's ghetto, the southwest
section of town.
Their mission: persuade city residents to take part
in the first-ever study of a single community's experience with AIDS.
It was tough going from the start, both inside and
outside the ghetto. People living in Belle Glade were tired of
hearing their city described on TV as "the AIDS capital of the
world." Many of those selected randomly to participate in the
study wanted nothing to do with it.
"Some of the people wouldn't even let us
in," recalled Clair Surgeont, a Belle Glade native hired as a
solicitor for the research project. "Or if they let us in, once
they found out what we were doing, they got angry and showed us out."
Surgeont and the rest of the solicitors-- a mixture
of state health officials and Belle Glade natives-- tried to impress
local residents with the need to understand why AIDS was spreading so
quickly through their community. Few people they spoke to realized
how serious the problem had become.
By the time solicitors began recruiting for the
study, the incidence of AIDS among Belle Glade's 17,000 full-time
residents was higher than anyplace else in the country.
And one in 11 city residents seeking treatment at a
public health clinic for other medical problems was found to be
carrying the human immunodeficiency virus (HIV) that causes the disease.
Even more puzzling: A high percentage of the city's
AIDS cases didn' t fit the usual profile. Nationwide, 90 percent of
AIDS patients were male homosexuals or intravenous drug users. Those
groups accounted for only about half of Belle Glade's AIDS cases.
The process of unraveling the mysteries began in a
rented Winnebago.
In one section of the mobile home, Belle Glade
residents answered a battery of detailed questions about their sexual
habits, drug use and living conditions.
"We asked everything you could think of,"
said Jim Cobb, Palm Beach County's AIDS coordinator at the time.
"By the time we got done with that questionnaire, we knew
everything there was to know about a person."
In the back of the Winnebago, the residents had
blood samples drawn. The samples were tested for exposure to HIV and
other viruses that might be tied indirectly to HIV. Project leaders
later rented a second Winnebago.
By then, there were 43 confirmed AIDS cases in
Belle Glade. Twelve, or 28 percent, were listed as NIR cases, meaning
"no identifiable risk factor." The subjects were
heterosexual, they were not intravenous drug users, and they were not
Haitian. Haitians were considered an AIDS risk group, though experts
now say Haitians are at no greater risk than people of other nationalities.
Researchers working on the project already knew
that an increasing number of female prostitutes were circulating in
Belle Glade. Some were exceptionally industrious.
One prostitute, interviewed in 1985, estimated a
career total of 24, 000 sexual contacts. She was 28 and had been
turning an average of more than four tricks a day since she was 14.
Incredibly, she tested negative for exposure to AIDS.
Other prostitutes were carrying the virus. And
sexual activity was rampant inside Belle Glade's shooting galleries,
an ever-changing group of filthy apartments where addicts shared
contaminated needles and traded sex for drugs. Today, sex is still
reliable currency in Belle Glade's "bloop houses," where
"rock stars" gather to smoke crack.
"People in this area generally don't have a
regular job," said Elvis Jerningan, who recruits ghetto
residents to participate in a three- year study of drug use, sexual
behavior and AIDS in Belle Glade. "They hustle for a living.
They may go out and do a couple of days' work, enough to support
their crack habit, but that's it."
Even before 1986, health officials suspected that
prostitution and drug- related anonymous sex were fueling the AIDS
epidemic in Belle Glade.
Cobb, who had tracked venereal-disease cases in
Palm Beach County for the state in 1977, said sex with multiple
partners-- often as many as 30-- was nothing new in the city's ghetto.
"Our interview sheets would, I think,
accommodate eight sexual contacts, " Cobb recalled of the
venereal-disease program. "We were grabbing two, three, four
sheets at a time."
It seemed logical, he and other health officials
argued, that most of Belle Glade's unexplained AIDS cases were people
whose long list of sexual partners included someone in a high-risk group.
LIVING CONDITIONS A FACTOR
Dr. Mark Whiteside, who had sounded the first
public alarm about the city's epidemic, had a different theory. He
and his partner, Dr. Carolyn MacLeod, were convinced that living
conditions-- marked by poor sanitation, abject poverty and constant
exposure to mosquitoes breeding in tires and stagnant ponds-- were
the key to Belle Glade's AIDS epidemic.
Whiteside did not suggest that a single mosquito
bite would transmit AIDS to a healthy person. But he theorized that
people growing up in extreme poverty whose immune systems have been
weakened by infection and disease could contract the HIV virus from
mosquitoes, especially if bitten literally hundreds of times a day,
as many of Belle Glade' s field workers were.
The 1986 study, financed and organized by the
federal Centers for Disease Control and conducted by Florida's
Department of Health and Rehabilitative Services, was intended partly
to find out whether Whiteside was right.
It also marked the first time health officials had
scrutinized a single community's experience with AIDS.
Reporters from all over the country descended on
Palm Beach County to chronicle the research effort and to hype Belle
Glade's stark poverty and its unfortunate status as the city with the
highest incidence of AIDS in the country.
That label wasn't entirely deserved, health
officials said. They said there were other urban settings where the
incidence probably was just as high. But those neighborhoods, inside
large cities, did not report AIDS statistics separately. Belle
Glade's numbers stood out because the city was isolated.
Project directors learned by doing
They had assumed that Belle Glade natives would
make the best solicitors because they had grown up in the community
and were familiar to local residents.
But AIDS had become such an unwelcome subject in
Belle Glade that even solicitors native to the city often had little
success persuading other local residents to visit the Winnebagos.
Frustrated project leaders called in U.S. public
health advisers - - veterans of venereal-disease programs in other
states-- who had years of experience knocking on doors and overcoming
resistant attitudes.
10-HOUR DAYS, 6-DAY WEEKS
The number of people visiting the Winnebagos
tripled, from six people a day to 18 a day. Residents participating
in the study were offered $10 cab fare to encourage them to visit the
C.L. Brumback Community Health Center for the results of their blood tests.
"We were working 10 to 12 hours a day, six
days a week," Cobb said. "It was physically draining, but
it was emotionally uplifting, too."
Health officials moved the two mobile homes through
Belle Glade's neighborhoods, making sure they didn't park them next
to homes targeted in the study, since that would have threatened the
anonymity of people living there.
"There were periods of demoralization,"
recalled Spencer Lieb, manager of the communicable diseases program
for HRS. "You would go a day or two without finding anyone at
home. People would say they would come in and didn't. And in the
summer, there was the weather. No one found sampling door- to-door at
the height of the Belle Glade summer very appealing."
Researchers began adding to the "clusters"
of AIDS patients linked by sex or drug use that Dr. Ron Wiewora,
director of Palm Beach County's health department clinic in Belle
Glade, had begun compiling three years before. They started with two
groups-- one for gay men, one for heterosexuals.
"It was very tedious," said Dr. Ken
Castro, the researcher at the U.S. Centers for Disease Control who
directed the 1986 study. "You had to go out and find out who was
having sex with whom."
With Wiewora's help, health officials discovered
new links of transmission between individual AIDS victims. The two
clusters merged, expanding to include 19 AIDS victims, then 25, then 30.
EVIDENCE OF RISK FACTOR
"It became quite evident that most of these
people with no apparent risk factors did have risk factors that had
not been discovered right away," Castro said. "By and large
these people ended up being the sexual partners of (intravenous) drug users."
By the time the study was 2 months old, health
officials had all but dismissed the possibility that mosquitoes or
poor sanitation played a role in spreading AIDS in Belle Glade. They
noted that the HIV virus wasn't showing up in young children or
people over 60.
By the time the Belle Glade study ended in
September, researchers and health officials had interviewed and
tested 959 city residents. Thirty tested positive for exposure to HIV.
What the study found was that the HIV-positive men
and women were more likely to have a lower income, report sex with
intravenous drug users, have a history of venereal disease and be
from Haiti.
They also were more likely to have more sex
partners within the past five years-- and more lifetime sex
partners-- and to have been paid for sexual favors.
The 1986 study clearly established the role that
heterosexual sex could play in spreading the disease. And it helped
lay to rest fears that AIDS was spread through casual, everyday contact.
"There was very little understanding then of male-to-female
transmission and female-to-male transmission," state AIDS
investigator Dave Withum said. "Belle Glade was a sentinel that
this was the next wave of the epidemic." *more
*part 1
*part 1 sidebar: Fear
Forces Many to Conceal Disease
*AIDS Facts
*top
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