Miami Herald - Sunday, November 10, 1985
Steve Sternberg, Herald Medical Writer

The cluster of at least 29 victims challenges the century-old belief that multiple sclerosis is a noncommunicable Snow Belt illness, rare in the tropics. Its grip on health workers at Florida Keys Memorial Hospital indicates that the disease may be infectious.

A five-month study by The Miami Herald suggests that prolonged person-to-person contact may play a more critical role in transmitting MS than was previously believed.

The study relied on methods used by medical detectives in such epidemics as toxic shock syndrome, Legionnaire's disease and AIDS. The results are based on computer comparisons of data from 29 MS victims, 45 randomly chosen volunteers and 31 others.

Until now, multiple sclerosis has been as baffling to scientists as a combination lock with unknown numbers. If Key West proves multiple sclerosis is transmitted from person to person by a virus, scientists would have the first number to the combination.

The next obstacle would be to learn why some people succumb to the virus while others apparently are immune. Other factors, including genetics, environment, past illnesses, and the timing of infection all may be part of the missing combination.

So important is the cluster that two competitive teams of scientists have converged in Key West to study it. The state of Florida is comparing healthy Key Westers with MS victims to pinpoint differences. This week the Wistar Institute and the National Cancer Institute will announce they have found a new virus in victims' blood.

The discovery of the new virus appears to coincide with The Herald's findings, says Lee Husting, Ph.D., professor and epidemiologist at the University of South Florida, who analyzed the data for The Herald.

"It appears to me the data seems to fit an infectious process," Husting said, "but one that requires multiple, repeated very close contact. I personally have no hesitation about visiting Key West or Florida Keys Hospital.

"Even if this is an infectious process," he said, "I would not expect to be affected by it as a tourist or as a visitor to the hospital."

The Herald study indicates:

* The cases are 23 times more likely to be health workers at Florida Keys Memorial Hospital than a group representative of the community. This is based on a widely accepted estimate of risk called an odds ratio.

* The odds are 1,000-to-1 that an association this strong between MS cases and Florida Keys Hospital could have occurred by chance, Husting said.

* The multiple sclerosis prevalence rate among nurses at the hospital is 8,000 per 100,000 people. The rate for employees is about 3,000 for every 100,000. "It is unprecedented," Husting said.

The MS rate for Key West as a whole is about 100 for every 100,000, among the highest in the world. By contrast, even in the nation's "MS belt," north of 46 degrees latitude, rates rarely exceed 80 MS victims per 100,000 residents. Rates in tropical Key West would be expected to fall somewhere between three per 100,000 and 10 per 100,000.

* State epidemic experts were notified of the Key West cluster by a University of Miami neurologist in 1983. They waited two years to begin on-site research into the outbreak though the disease was epidemic, interviews and records showed.

* Multiple sclerosis grew in the last decade in Key West faster than during one of the world's best-known MS epidemics, in the Faroe Islands off the Denmark coast. The 25-case Faroe epidemic occurred between 1943 and 1977, with a peak of six cases diagnosed in 1946. No cases were diagnosed from 1949 to 1960, when three more appeared.

In Key West, one case was reported in 1971, and 25 surfaced in the next decade. Fourteen of those were diagnosed between 1983 and 1985, when medical attention began to focus on the outbreak, The Herald study showed.

'Great implications'

"I've heard about this epidemic," said Dr. David A. Hafler of Harvard University and the Center for Neurological Diseases at the Brigham and Women's Hospital in Boston, one of the nation's leading MS researchers. "It obviously has great implications."

Although the odds are unlikely that the Key West cluster occurred by chance, Hafler said, coincidence cannot immediately be ruled out. Nevertheless, he said, "My own personal bias is that there may be something to this, and there may be a group of viruses triggering the deregulation of the immune system."

The links between the MS victims and the hospital are "staggering" but difficult to interpret, Husting said. "It really strengthens the argument that this is an infectious process, though I'm not sure we're any closer to knowing where it's coming from."

The study raises compelling questions: Is the outbreak emanating from a single source? If so, why does it bypass many in close contact with victims, particularly their families? How does it spread? Why does it cripple some victims and lapse into remission in others?

Why nurses, not doctors or janitors?

Answer in 'co-factors'?

The answer, experts say, may lie in so-called "co-factors" of environment, timing, and genetics. "It's as if you have a one-armed bandit," said Gus Sermos, a CDC public health adviser based in Miami and studying AIDS. "Unless all the lemons line up, you don't hit the jackpot."

For a select group of people living in Key West, the conditions apparently were perfect. MS has forever altered the balance of their blood-borne defenses, unleashing powerfully destructive blood cells to attack nerves in the brain and spine.

The cells, called macrophages, gnaw holes in the nerves' myelin insulation. Like frayed electrical wires, the nerves short-circuit, with devastating results: numbness, intolerance of the tropical heat, loss of bladder control, paralysis, blindness.

To track the origin of the disease, The Herald interviewed 26 Key West residents who have been diagnosed as having multiple sclerosis and three diagnosed as possible cases.

Their answers to questions about their homes, their occupations, their medical histories, and their family medical histories were compared with those of 45 healthy volunteers chosen at random, and 31 volunteers from the hospital.

The goal was to learn what victims have in common that might make them vulnerable to the disease.

A pattern began to emerge, though its meaning remains unclear. In case after case, the MS victims either lived or worked on Stock Island, a flat expanse of coral, sawgrass and sabal palms, a five-minute drive across Cow Key Channel from Key West.

The Stock Island cluster was remarkable: eight nurses and two medical technicians at Florida Keys Memorial Hospital; a nurse at Florida Keys Community College; another nurse at the Key West Convalescent Center. Two worked in municipal buildings; another teaches in Gerald Adams elementary school, and four lived in nearby Key Haven, a quiet middle-class community bordered by canals.

Four things stood out clearly.

At least half the health workers arrived in Key West before age 15. By then, researchers believe, MS victims develop a predisposition for the disease. The victims also arrived in Key West earlier, lived in Key West longer, had more relatives with multiple sclerosis, and had spent more years in contact with other MS victims.

Most significant: Ten had spent years working together at Florida Keys Memorial Hospital. Nursing instructor Anna Mae Scarlet, diagnosed in 1976, had worked with them.

Scarlet, 45, of Florida Keys Community College, had trained three of the other victims to be nurses. The hospital's assistant administrator, nurse Joan Higgs, diagnosed in 1978, has spent approximately a decade working with Scarlet and other nurses in the hospital.

Still unknown, Husting said, is what could have triggered the cluster at Florida Keys Memorial Hospital. Tracing a chain of contacts would be difficult, particularly with a disease that apparently does not afflict everyone who comes in contact with a victim, he said.

Susan Peacon, 86, the island's first known MS victim, would be one possible beginning, Husting said. Peacon, who has left the Keys only once or twice in her life, was diagnosed in 1936 by specialists at Johns Hopkins University in Baltimore.

Since 1976, Peacon had been surrounded by nurses either in the hospital or a neighboring convalescent home. Stephanie Cooper, Joan Higgs, Phyllis Nichols, and perhaps other victims, all have cared for her. The nurses change her catheters, bathe her and brace her head to quiet her tremors so she can eat.

This hypothetical chain of transmission has troubling gaps, however. Anna Scarlet says she has never treated Susan Peacon. Yet, Scarlet has MS.

The case of Danny Toppino, diagnosed in 1971, is another enigma. Toppino, an island dweller whose family concrete business literally poured the foundations for much of Key West, was the first victim of the modern cluster.

Although he knew of Peacon, he doesn't remember meeting her. "For all I knew, I was the only one in town with MS," says Toppino, 37. "After that there was Anna Mae. Then everybody else.

"It was getting strange," he said.

In 1976, Scarlet asked for an appointment with neurologist Dr. William Sheremata, of the University of Miami. "I was falling over furniture," Scarlet said.

UM had recruited Sheremata from McGill University in Canada for his expertise in multiple sclerosis. His diagnosis: MS. For all his expertise, Sheremata could not tell her why she had suddenly developed the disease.

Two years later, Joan Higgs, a nurse at the hospital, sought Scarlet's advice. Higgs, now 37, was frightened about her own symptoms of numbness and weakness in her legs. Scarlet suggested Higgs see Sheremata. His diagnosis: multiple sclerosis.

Then, in 1983, came Stephanie Cooper. The nurse, now 29, had fallen in her shower. The next morning, she awoke half blind in her left eye. "My first thought was I had detached my retina. Then I denied it. I wanted it to go away. I called in sick and stayed in bed for four days."

Finally, she went to see Sheremata. He told her she was the third MS victim at Florida Keys Memorial Hospital. "That's when I talked to Joan and Anna Mae," Cooper said. "We were saying this is really strange, something is going on here."

In July, Sheremata placed an advertisement in The Key West Citizen. He offered to hold a free clinic to screen for the disease. Twenty-four people responded; 16 were diagnosed with MS.

On Nov. 16, 1983, Sheremata notified the state in a letter that at least 20 cases of MS had been diagnosed on the island. His note said Key West's MS rate was 81 cases for every 100,000 inhabitants.

"It must have been mishandled or mislaid or wound up on the bottom of a pile," said Dr. James Howell of the state Department of Health and Rehabilitative Services. No response was written, Howell said, and no on-site state investigation would begin for a year and a half.

The nurses wanted answers. They began to meet at each others' homes, called themselves the "MS action committee" and named as their chairwoman Diana Collins Selgado, whose sister Beth Kuhnke, 33, a nurse at the hospital, was diagnosed in February 1984. Anna Scarlet, Judy Meggs, Stephanie Cooper, Gennie Walterson and others drank coffee and iced tea and discussed what to do.

In full view

Many decided the problem was environmental -- and in full view.

Towering over Stock Island and Key Haven is the city's majestic garbage dump, known locally as "Mount Trashmore." Mercury leaches from the dump into nearby ocean sediments.

Flocks of gulls feast there and scatter droppings over the adjacent Gerald Adams elementary school yard.

Dr. Jose Bofill, of the Monroe County Department of Health, repeatedly has called the 19-acre, six-story landfill "a public health hazard." Dr. Theodore Ingalls, professor emeritus at the Boston University School of Public Health, is convinced an MS toxin lies amid trash and tires.

"As far as the Key West outbreak is concerned," Ingalls said, "I think it is due to aerosol combustion of mercury and lead at the base of that tremendous trash pile." He said he has done no scientific studies to back up his claim.

He has never visited the island.

Last summer, he contacted Florida Keys Memorial and asked for money to come to Key West to study the epidemic. The hospital politely declined, said spokesman Tom Puroff.

R.J. Helbling, of the state Department of Environmental Regulation, says the state found not only mercury but also chromium, copper, iron, lead and zinc in sediments at four sites 100 feet offshore. But tests on sea life suggest that the water itself is nontoxic.

"Are people eating sediments?" Helbling asked. "There's no fishing industry there -- there's only two feet of water, you can't even get a boat in. The only shellfish there might be oysters, but there are no oysters collected in the Florida Keys, they come from Apalachicola."

"Laying the blame on Mount Trashmore," Helbling said, "is pure speculation."

'Why healthy nurses?'

Husting agrees. "If it were Mount Trashmore, you would expect much larger outbreaks, and you have two populations of extremely vulnerable people on the doorstep -- schoolchildren and old people in a nursing home," he said. "Why healthy nurses?"

Others worried that Key West beaches had been contaminated by the 3.5 million gallons of raw sewage that the city dumps 4,000 feet offshore each day. They wondered whether their drinking water had been polluted by leaky sewage lines, now slowly being replaced.

Key West's ancient sewage lines are so porous that another three million gallons of groundwater leaks into those pipes every day. With pipes so full of holes, Helbling says, sewage also leaks out when groundwater levels fall. "I'm sure there is sewage-contaminated groundwater under Key West," he said.

The Monroe Health Department already advises against drinking groundwater from the dozens of century-old wells in Key West's Old Town. The city's drinking water is piped in through a 154-mile pipeline from the South Dade wellfield.

On standby is Key West's desalinization plant, built in June 1980. The plant, for use only in emergencies, is designed to filter sea salt from 2.9 million gallons of water per day. None of the water thus far has ever entered the water supply, said Paul Gedman, of the Florida Keys Aqueduct Authority in Key West.

If it were used, the de-salting filter is so fine that no bacteria or viruses could penetrate it, Gedman said. "If salt molecules were the size of a baseball, bacteria and viruses would be the size of a basketball," Gedman said. "They'd never get through."

The water supply is safe, according to engineer Bernard Shattner of the Florida Keys Aqueduct Authority, though pressure failures sometimes draw polluted groundwater into city water lines.

Some victims even speculated that the island's small AIDS epidemic may somehow be linked to MS. Sheremata and Dr. Hilary Koprowski, director of the prestigious Wistar Institute in Philadelphia, have tested Key West MS victims for HTLV-III, the AIDS virus. No evidence of AIDS was found, Sheremata said.

If polluted drinking water were causing MS, the ailment would be widespread. It is not. And polluted beaches also are unlikely, Husting said. No swimming patterns emerged in the Herald study that suggest any health hazards from beaches tainted by sewage.

"You have to have an opportunity for exposure to occur," he said. "Mount Trashmore is visible, but it is speculative. It is several hundred yards away. If the outbreak is infectious you have to have a means of transmission. The statistics, the subgroup of nurses, and the timing all are compatible with an infectious process."

The evidence, says Husting, lies hidden in victims' blood.

MONDAY: How state officials responded to the Key West epidemic.

CAPTION: CHART, PHOTO, MAP

Horace 'Bubba' Averette carries wife Carol (MULTIPLE SCLEROSIS); map: Key West, location of victims (2), Stock Island-Key Haven; chart: cases in Key West 1930-1985, where victims came from

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