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AMERICAN ALBUM

Only U.S. leper colony faces uncertain future : Scientific advances, budget cuts could close the Louisiana facility.

November 29, 1993|GARRY BOULARD | SPECIAL TO THE TIMES

CARVILLE, La. — Hidden from view in a bucolic grove about 20 miles from Baton Rouge, La., the only operating leper colony in the continental United States has been Jose Azaharez's home for a quarter of a century.

"This is all I have in the whole world," said Azaharez, a former welterweight boxer from Cuba who was diagnosed with the disease in the 1950s and is now marginally disfigured.

"If I had to leave here, where would I go? Who would I stay with? This is the only home I know."

That Azaharez, 59, even contemplates such questions is an unintended result of medical and therapeutic advances that have nearly eradicated leprosy worldwide, and of the budget-cutting process that federally funded programs must endure these days.

Situated on 350 isolated acres near the Mississippi River's edge, the Carville facility is in danger of being closed, a prospect that will shatter the cloistered world of Azaharez and the nearly 160 other patients who have lived here for decades.

"You can argue against the size and scale of a center like this for treating the disease today," said Bruce Clements, clinical chief of the facility, "mainly because people don't come here any more and stay for life. Now a new patient may stay here for only about three or four days and be treated from that point on an outpatient basis."

In earlier times, leprosy could mean ostracism, violence and religious condemnation. In biblical days, lepers were vilified outcasts whose garments where burned after victims were forcibly disinfected and quarantined.

In France during the 13th Century, more than 2,000 leprosariums were built to facilitate mass government roundups in the face of an epidemic. Such roundups went on in other countries into this century. As recently as the 1930s, lepers in China were sometimes burned alive in attempts to prevent the disease's spread.

In the United States, laws in some states during the first decades of this century allowed sheriffs and local health officials to arrest and confine anyone suspected of carrying the disease.

When the Carville center was established in 1894, its founders were forced to lie about their mission for fear of violent local opposition. They told residents that they were opening an ostrich farm. The first patients were brought in at night on coal barges from New Orleans.

Medical advances have been dramatic. In 1941, the development of sulfone therapy made leprosy non-contagious. Daily doses of the antibiotic dapsone and monthly doses of rifampin have proved so effective that last summer the World Health Organization set the year 2000 as its target date for virtually eliminating the disease.

Also called Hansen's disease, after Dr. Arthur Hansen, a Norwegian scientist who identified the bacillus causing the sickness, leprosy is typically marked by skin lesions, tissue degeneration and a numbing of nerve sensation. Many patients lose the use of their fingers and toes, while others suffer paralysis or blindness.

"No one is still really certain what causes leprosy," said Clements, who has worked at the Carville facility for more than 20 years. "But we do know that up to 90% of the population will not get it, no matter how often they are exposed to it, and of the remaining 10% who can catch it, only 10% of them are at any point contagious."

Although national health officials estimate that at least 6,000 people in the United States have leprosy today, most new patients come from Third World countries, particularly Brazil, India, the Philippines and Vietnam. The number of cases worldwide has dropped sharply in the last decade, from more than 12 million to just over 3.1 million.

Because so few patients are contagious, and the vast majority of new cases do not require institutional care, centers all over the world have closed in recent years.

At Carville, where the facility is officially called the National Hansen's Disease Center, the research department has been transferred to a nearby university. Now, low-security federal prisoners have been brought in to use the spaces left empty when older patients die.

Some studies have suggested that the roughly $21 million in federal funds the center receives annually could be put to better use. "The national needs now are so tremendously different from what they were 99 years ago," said Joel Nitzkin, a public health physician in New Orleans and the author of a study recommending that the center focus on short-term outpatient care.

Other proposals call for closing the facility and moving the remaining patients to other care facilities.

Whether the Carville center remains open or closes, Azaharez says: "I would never want to go through again what I went through before I came here."

Remembering how both family and friends abandoned him once his disease became common knowledge in Cuba, he said: "If a father has a son with leprosy, he's a father without a son. No one wants to know about you or think about you. You are forgotten. And that's a feeling you never forget."

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