COLUMN ONE : Politics of an Epidemic : The mystery outbreak in Cuba turned out to be a nerve disease caused by malnutrition. Some blame inaction by the image-conscious regime, and question ethics of the U.S. trade embargo.

It was the largest epidemic of its kind in history.

From November, 1991, through the summer of 1993, the bizarre neurological disorder struck more than 50,000 people in Cuba, frightening and mystifying the bereft island nation.

Most victims became partially blind, perceived colors as gray or viewed the world as if through grease-covered glasses. Many also suffered nerve damage in their legs and feet, which caused intense pain, a wobbly gait or numbness so profound they had to deliberate over each robotlike step.

In the four years since the epidemic began, dozens of scientists from around the world have visited Cuba, looking into possible causes from leaking pesticides to exotic viruses to germ warfare by the CIA.

This month, the official U.S.-Cuba government research team released its long-awaited study. The conclusion is as pertinent to U.S. policy as it is damaging to Cuba’s pride: Tens of thousands of Cubans were not getting quite enough to eat.

The study, published in the New England Journal of Medicine, documents that with the 1991 collapse of the Soviet Union, Cuba’s prime benefactor, many Cubans started skipping meals or squeaking by on a bland diet consisting primarily of beans and unfortified rice. Thus deprived of vitamins and other nutrients necessary for nerve function, many developed the disorder, called nutritional neuropathy. It was disabling but not deadly, in the twilight between passing hunger and outright starvation.

The massive epidemic ended abruptly, months after the Cuban government handed out vitamin pills. But cases of nutritional neuropathy still occur now and then, according to the Pan American Health Organization. A balanced diet eludes a great many people, and the only thing preventing the return of la neuropatia epidemica , some medical researchers say, is that free vitamin pill Cubans are urged to swallow daily.

Although it was the most spectacular epidemic of nutritional neuropathy ever, it was not the first. A strikingly similar disorder broke out among prisoners of war during World War II in Asia and the Middle East, and also in Cuba at least once. That was at the turn of the century, during the Spanish-American War, when the U.S. Navy blockaded the already distressed island.

Every epidemic tells a story about the time and place where it occurred. The story of the Cuban epidemic is about dangerous scarcity and hardship on a vast, largely unacknowledged scale; about a Cuban government that is responsive enough to hand out vitamins but disingenuous enough to deny publicly that its people were malnourished, and about a U.S. government whose policies, some medical researchers charge, have added to the suffering.

Beyond that, it’s about a powerful conflict between public health, with its tradition of scientific dispassion, and politics, that most zealously self-interested pursuit. Indeed, some researchers view the epidemic not primarily as a medical problem but as a social problem with medical consequences.

Dr. Gustavo Roman is a Colombian-born neurologist who participated in the U.S.-Cuban study while working for the U.S. National Institutes of Health. “In the final analysis,” he said, “the outbreak of neuropathy in Cuba may represent the first epidemic of neurological disease whose cause is primarily political.”

Shortages Common

The epidemic grew out of what President Fidel Castro called “the special period,” a time of strict government food and fuel rationing that followed the Soviet Union’s collapse.

Energy blackouts prevailed. Gasoline vanished. At bus stops, long lines of people wilted in the heat. Central Havana streets, virtually empty of private cars, were jammed with people on Chinese bicycles that had improbable English names like Forever.

The food shortages were the most agonizing. Pork disappeared, although not from the tourist hotels or the black market. The individual bread ration was a quarter of a loaf per day. The egg ration amounted to 1 1/2 eggs per week.

A highly educated Havana woman who worked for the United Nations said in the fall of 1993 that between all the bicycling and skimping, she lost 30 pounds. She loved coffee with milk so much that her friends called her cafe con leche. But she couldn’t remember the last time she had coffee or milk.

If it seems obvious in retrospect that chronic malnutrition brought on the neuropathy epidemic, there was no such clarity when people rather suddenly lost the full use of their eyes in the far-west city of Pinar del Rio in November, 1991.

The initial cases were lean men in their 60s who smoked cigars and had no trouble consuming the bottle of rum that was the weekly government ration. Local doctors, after interviewing the men and checking their eyes, diagnosed the disorder as “tobacco-alcohol amblyopia.” It afflicts Skid Row alcoholics, whose bodies are so wrecked that the scant nutrients they take in are hardly absorbed, while tobacco poisons are rendered more toxic to their nervous system.

Over the next few months, dozens in Pinar del Rio developed blurry or partially blacked-out vision. But not all smoked or drank much. So, according to Cuban government documents, doctors began to suspect that a nutrient deficiency was the root problem.

Throughout 1992, the disorder became more common, and, curiously, spread east. By the end of the year, 472 cases had been reported nationwide.

Then, in early 1993, two things happened that confounded physicians. First, people started developing the lower-limb neuropathy. Second, the epidemic exploded. By mid-March--the peak--about 500 Cubans per day were being found to have neuropathy of the eyes or lower limbs, or both.

Now the government began to retreat from early consideration of the malnutrition theory, even as an alarmed public, pouring into hospitals for eye exams, blamed the all-too-evident food shortages. In April, the Reuters news service reported that “Cuba’s Communist authorities, working to check a nationwide epidemic affecting eyesight, are also fighting a widespread conviction among the island’s people that lack of adequate food is the sole cause of the disease.”

Taking advantage of the legitimate scientific uncertainty surrounding the epidemic, Cuban officials and doctors raised new possibilities. The tried-and-true Soviet pesticides were gone, replaced by others of dubious South American origin. Weird viruses were running amok around the world--did a new strain alight there? And, dipping into the old well of hostility, some doctors wondered aloud if maybe the United States had surreptitiously spread a nerve-attacking microbe.

In May, at a World Health Organization meeting in Geneva, a Cuban government health minister said the epidemic “was unlike anything that has occurred before.” And in an ominous, if deeply ambiguous, reference to the United States, he added, “We cannot ignore the role the enemy has played in the origins of this disease.”

That summer, Cuba invited foreign scientists, including those from “the enemy,” to study the problem. And in September, the U.S.-Cuba study started at “ground zero” in Pinar del Rio.

Roman, the unofficial liaison between the U.S. and Cuban researchers, suspected almost from the start that the epidemic reflected a nutrition problem. “It’s awfully embarrassing to Cuba,” he said at the time. “How is it going to handle this? Go begging for food on the international scene?”

In the study, Cuban and American researchers, led by a group from the U.S. Centers for Disease Control, identified 123 adults with optic neuropathy and matched them against control subjects of the same gender and age.

The researchers analyzed blood and urine, and performed neurological tests from eyeball to toe. Field workers went to subjects’ houses and conducted interviews for hours about diet, medications and chemical exposures. They looked into medicine cabinets and under kitchen sinks.

According to the just-published report, they found that, compared to the controls, the neuropathy patients had a much poorer diet and were more likely to have missed meals. Nearly 20% had sometimes gone hungry for an entire day, compared with 3% of the controls. The surveys also showed that the patients were less likely to raise chickens, grow vegetables or have outside income.

Dietary surveys suggested that in the months before developing their disease, the patients had comparatively low levels of Vitamin B-12, riboflavin and niacin. Those B vitamins, which are most abundant in dairy products and meat, are vital to nerve function.

Smoking may have abetted the disease in many people, the researchers said; 80% of the patients smoked, mainly cigars, compared with 40% of the controls, said Dr. Caryn Bern, a CDC nutritionist involved in the study. And the more cigars people smoked, the more likely they were to develop the disease. The researchers speculate that a deficiency of vitamins and other nutrients, which help break down toxic substances, rendered smoke more toxic to nerves.

Still, tobacco’s effects were clearly secondary to the nutrient deficiencies: the neuropathy was virtually unheard of among smokers who were well fed. “If you can afford pork chops, you can have a nice cigar,” Bern said.

Of course, people go without meals even in the richest nations; what makes these revelations so discomfiting to Cuba is that the socialist government had promised it would not happen there. Ironically, in February, 1992, just as the epidemic was beginning, Cuba’s vice president, Carlos Rafael Rodriguez, said that food production was “the nation’s No. 1 priority,” and that “we are firm in the belief that it will ensure that the Cuban people have the necessary food.”

If the epidemic revealed that the government was failing on a proud promise to feed everyone, it also betrayed the existence in that supposedly classless society of unacknowledged extremes of poverty and wealth. As the New England Journal report shows, the neuropathy patients were poorer, less educated and more likely to be unemployed than were the controls.

In fact, poverty may explain why the epidemic began in Pinar del Rio, a place so downtrodden it has long been known as the “Cinderella Province.”

One morning in the fall of 1993, Roman led a reporter up a narrow footpath, through dense greenery and into a cluster of wood-plank dwellings with thatch and metal roofs.

Two neuropathy patients lived in adjacent tumble-down dwellings where there is no plumbing and the windows have no glass. One was a man in his 60s, a tobacco worker disabled by partial blindness. He wore a white shirt that was absurdly big on him, hinting at a loss of many pounds. For months, he said, he basically had been living on rice and beans.

“It’s a very poor neighborhood,” Roman said. “The conditions are quite typical of cases. There is no garden for food supplementation. They have no animals, no chickens, no pigs. They depend exclusively on what they get through the ration card.”

And the minimal government rations were not always to be had. The only available product in a government meat and dairy shop in Pinar del Rio one morning was milk--and that was restricted to children under 8 and pregnant women. “Maybe some chicken next week,” the white-coated vendor said with all the conviction of a castaway tossing a note into the sea.

The new U.S.-Cuba report, like official Cuban reports before it, emphasizes that no one died of neuropathy. While that may be true, Roman said recently that he saw autopsy reports on two Cubans that revealed underlying beri beri--the classic Vitamin B-1 deficiency disease, which can attack the heart. “Many people may have died of what looked like a heart attack,” Roman said. “But how many of those were due to [Vitamin B-1] deficiency?”

Critical as he is, Roman is no enemy of Castro’s Cuba. While there in the fall of 1993, he briefly enrolled his son in a Havana school, making the boy an honorary pionero --a budding Communist. It’s just that he believes that candor, rather than the diplomatic ambiguity practiced by the Cuban government, best serves the Cuban people.

Bluntly, Roman says the epidemic represents “the neurology of hunger.’

Denying Disease

To be sure, the chronic so-called micronutrient malnutrition in Cuba is not the famine of Somalia or Haiti, where children and adults are so calorie-starved they waste away and die. In Cuba, calories have been available--the leading crop is sugar, after all--but they have been comparatively empty calories. An internal 1993 health ministry report admitted as much, saying that “the loss of our purchasing powers” has cut into grain and feed supplies, so that Cubans’ “nutrition balance has been upset.”

Perhaps not surprisingly, the government has disputed that the epidemic resembled past outbreaks of neuropathy among prisoners of war, which was known as “camp disease.”

But the CDC’s Bern said: “I’m pretty convinced they’re the same disease.”

Like the outbreaks of “camp disease,” Bern said, the Cuban epidemic arose suddenly among previously well-fed people who now were forced to subsist primarily on unfortified rice, lived in a warm climate and were very active (prisoners in labor camps, Cubans because of the gas shortage).

The POW analogy might embarrass Cuba less if the image did not square with other images of oppression, like the dissidents in Castro’s jails and the young desperadoes who escape by drifting across the Florida Straits in tire tubes. Plucked from the Gulf two years ago, one man was asked by an American TV reporter why he ventured the crossing. “I was hungry,” he said.

Role of Embargo

Inevitably, the epidemic has renewed debate over the U.S. trade embargo against Cuba, which went into effect in 1962 after Castro’s expropriation of U.S.-owned property and criminal prosecution of dissidents.

The controversy over the embargo, which prohibits U.S. companies and their foreign subsidiaries from doing business with Cuba, has never been about whether it made Cuban life miserable. That has always been its objective.

What the epidemic has done is highlight the question of how much hardship the embargo does--or should--engender. The November study doesn’t mention the embargo, chiefly because U.S. government researchers aren’t allowed to criticize federal policy. But the report’s stark columns of data documenting that many went without meals show that life was tougher than policy-makers have acknowledged.

Critics of the embargo, including the Cuban government, argue that it contributed to the epidemic by driving up the cost of food just when the country went broke. They point out that it was in 1992, just as the epidemic was gathering steam, that the Cuban Democracy Act extended the embargo beyond U.S. companies to their foreign subsidiaries.

“We can take some credit for creating the conditions that allowed the disease to break out,” said Wayne Smith, head of the U.S. diplomatic mission in Cuba from 1979 to 1982 and a former embargo supporter.

Roman, who is now in private practice in San Antonio, recently argued for lifting the embargo on humanitarian grounds. Although it “may not have been the primary cause of the epidemic,” he wrote in the journal Neurology, “it has contributed to its development, and complicated its investigation and treatment, and continues to hamper its prevention.” Among other things, Roman said, Cuba has had to import soybean meal and other vital foodstuffs from China at high cost.

But the embargo’s supporters dispute this view. “The poverty of Cuba, which is making it impossible for them to import the foods that are needed, is not caused by the embargo but the failure of Cuban Communism,” said Rep. Robert G. Torricelli (D-N.J.), the leading architect of the Cuban Democracy Act.

“If it were possible to end the dictatorship and restore Cuban freedom without inflicting any difficulties on anyone, that is the route we would choose,” Torricelli added. The embargo, he said, is intended to create “a stark choice for the Cuban leadership of beginning political reform or living under difficult circumstances.”

At the moment, Cuba remains in the grips of the “special period.” Fuel is precious, though the blackouts reportedly are briefer. Bicycles clog the streets. And although farmers markets and other small enterprises have made it easier for some to make a living, currency is still short, food is still scarce.

“They’re desperate, going without meals,” said Dr. Anthony F. Kilpatrick, a University of South Florida anesthesiologist and outspoken critic of the embargo. “They’re sort of teetering.”

The U.S.-Cuba study says “it cannot be proved” that the government-issued vitamin pills ended the outbreak. But the researchers also concluded that the government should keep distributing the pills “until increased dietary quality and diversity can be achieved in Cuba.”

Surprisingly little data has been published describing how many neuropathy victims have recovered. “Most patients improved after treatment with vitamins,” the U.S.-Cuba report says.

Some estimates are that hundreds, if not thousands, of Cubans were lastingly injured. Kilpatrick befriended a Havana surgeon whose hands had nerve damage; he often cannot operate.

They are the epidemic’s living legacy, this army of wounded, left hobbling or groping from the effects of a bizarre disorder most reminiscent of the plight of prisoners of war. As the CDC’s Bern said of how even the plainest scientific findings ring with implications, “That’s sensitive data.”