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The patient's diagnosis-- an AIDS-related infection
that guaranteed a slow, lingering death-- puzzled Dr. Mark Whiteside
almost from the start.
The more Whiteside learned about C.R., a
53-year-old vegetable packer from Belle Glade, the less his illness
made sense. C.R. said he was heterosexual, had been married about 20
years and had never used intravenous drugs. It was 1983. According to
everything doctors knew about Acquired Immune Deficiency Syndrome at
that time, this man shouldn't have it.
"I knew him better than anyone else,"
said Whiteside, who treated C.R. in Miami for cryptosporidiosis, an
infection that causes uncontrollable diarrhea and weight loss in AIDS
patients. "The only thing he ever admitted to me was that many,
many years ago, he may have strayed and gone with a prostitute. But
AIDS wasn't even around at that time."
Whiteside, then director of the Institute of
Tropical Medicine in Miami, was intrigued. He and his partner, Dr.
Carolyn MacLeod, traveled to Belle Glade and began interviewing C.R.'
s relatives and neighbors in the city's impoverished southwest section.
What they discovered would ultimately focus
international attention on tiny Belle Glade and turn the city's AIDS-ravaged
slums into a frightening puzzle researchers were determined to solve.
When answers finally emerged, in a history-making
federal research project in 1986, Belle Glade would become a window
on the future of AIDS in this country. From the city's tragic
experience would come a new understanding of how the disease spreads.
But that understanding hasn't helped curb the
epidemic. Despite efforts by a host of researchers, educators and
counselors, AIDS continues to ravage the Glades.
One health official has predicted that the
incurable disease could wipe out the black community in western Palm
Beach County.
AIDS already was at home in Belle Glade by 1983,
when Whiteside and MacLeod made their first trip there. In a
neighborhood that stunned them with its poverty, the two doctors
found the beginnings of an epidemic.
"There were several other AIDS cases right in
the same area," Whiteside recalled. "People were telling
us, `So-and-so lived right down the street, and he had AIDS.' At that
time, we knew something was going on."
Dr. Ron Wiewora, who headed the public health
clinic in Belle Glade, already had reached the same conclusion.
As early as 1984, Wiewora noticed the number of
AIDS victims arriving at the clinic-- at that time a trailer on
Avenue D-- was increasing at an alarming rate.
Other trends made less sense.
About half of Belle Glade's early AIDS victims were
women, even though nationally, women made up only a very small
percentage of AIDS cases. And an increasing number of male residents
diagnosed with AIDS were heterosexual. At that time, AIDS experts
still didn't believe the disease was transmitted through heterosexual sex.
VICTIMS LINKED
"It was very frightening," Wiewora said.
"It was gradual at first; then the numbers kept doubling. Why
should this community have AIDS?"
To find out, Wiewora began mapping connections
between the town's early AIDS patients. He wrote down patients'
initials, grouping the victims linked by sexual contact or needle-sharing.
His initial "clusters" showed almost all
AIDS patients in Belle Glade came from a 10-block area in the city's
southwest section, where poor blacks are packed into unsanitary
shacks, mobile homes, apartment buildings and even abandoned buses.
"There was a certain mile-square area where
there were many, many early cases reported," Wiewora said.
"And we started seeing about an equal number of men and women,
which was an early indicator that something different was happening
in Belle Glade."
Wiewora's patients also told him that casual sex
with multiple partners -- often 20 or 30 a month -- was a fact of
life in the city's tenements.
AT FIRST, EASY TO TRACE
"We knew that everyone was sleeping with
everyone else," Wiewora said. "You saw all kinds of sexual activity--
competition to see who could get syphilis the most times in a year.
It was a sign of how sexually active you were."
There were other revelations.
One AIDS patient, a 29-year-old Belle Glade man who
sold drugs in South Florida and New Jersey, may have been one of the
earliest and most efficient contributors to the AIDS epidemic in
Belle Glade.
Wiewora said the unidentified man was diagnosed
with AIDS in New Jersey in 1982. He arrived at the public health
clinic in Belle Glade in 1982 or 1983 with an AIDS-related brain infection.
He died a few months later. Within a year, about 20
people who said they were among the man's sexual partners or had
shared needles with him also contracted AIDS, Wiewora said.
At that time, avenues of infection were easy to trace.
"You might see a man and a woman who were
married and then got divorced, " recalled Darleen Lee, the nurse
who supervised the health department clinic between 1985 and 1987.
"The ex-wife died of AIDS, the husband remarried and now he's
sick. And the ex-wife had a boyfriend and now he's dead, and so on
and so on."
AIDS CLINIC BEGINS
Wiewora and Whiteside agreed that the rising
incidence of AIDS in Belle Glade deserved closer monitoring. So
Whiteside began operatingan AIDS clinic there twice a month in 1984.
"On a typical day, we would see 20 to 25
patients with AIDS or ARC (AIDS Related Complex)," Whiteside said.
By May 1985, the per capita AIDS rate in Belle
Glade was five times higher than the rate in New York City. And
official statistics may have drastically underestimated the true
extent of the epidemic, health officials said, because many AIDS
victims were dying before they could be diagnosed.
"No autopsies were being done on these
people," Lee said.
In addition, some doctors in Belle Glade were
unwilling to perform diagnostic tests on patients who may have had
AIDS, health officials said at the time.
Even without such tests, Lee said, it often was
easy to spot the clinic patients with AIDS, Lee said.
UNUSUAL PATTERNS
"It got to the point where we could tell, when
someone walked in the clinic," she said. "There is a look
to these people, other than the weight loss. There were skin changes
and hair changes. Their hair would straighten out, become almost baby fine."
As the number of AIDS patients increased, so did
the number not included in the commonly accepted "high-risk"
groups-- homosexuals and IV drug users.
"At that time, there was very little
understanding of male-to-female and female-to-male transmission,"
recalled Dave Withum, who investigated and reported most of Belle
Glade's early AIDS cases for Florida's Department of Health and
Rehabilitative Services.
Withum said the number of Belle Glade cases coded
NIR-- for no identifiable risk group-- was considered extremely
unusual in 1985.
"I couldn't think of anywhere else in the
country where you had almost half your cases without any risk
group," Withum said. *more
*sidebar:
Fear Forces
Many to Conceal Disease
*AIDS
facts
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