Lives in Limbo for the Last 135 Hospitalized Leprosy Patients

Once again, their future is in doubt, their lives in limbo.

They are the last 135 people hospitalized with leprosy in the United States. Last month, President Clinton signed into law a bill transferring their federally owned hospital, the century-old Gillis W. Long Hansen’s Disease Center, back to the state of Louisiana, where it is slated to become a school and training center for at-risk youth.

Though the center at times has seemed more like a prison than a hospital, it has become a refuge for many of the elderly patients. They have been here for decades, and many fear leaving.

The sprawling, 330-acre former plantation, wedged along a bend of the Mississippi about 20 miles south of Baton Rouge, is a victim of its own success. Sulfone drugs developed at the center, operated by the U.S. Public Health Service since the 1920s, were the first step toward conquering leprosy. They and powerful antibiotics now control the 200 new cases of the disease diagnosed annually in the United States and keep symptoms at bay in the 6,000 other Americans chronically ill with it.

The population at Carville has dwindled from a peak of 450 in the 1950s to 135 now--too few to warrant its $17-million annual budget.

“It is sort of a cause for celebration that we almost don’t need a place like this anymore,” said political consultant James Carville, who grew up just a mile from the center and credits it with giving him an unusual window on the world. The town is named for his family, which ran the general store and the post office. Carville’s grandfather was the postmaster who met the first barge load of patients sent from New Orleans; to ward off trouble, the authorities had told him to expect a shipment of ostriches.

“Today, in Washington, dermatologists are treating people for leprosy on an outpatient basis,” Carville said. “We don’t need colonies to care for people. . . . But we do need to observe the commitment made to the older patients that are there.”

For them, the shadowy, screened halls long ago took on the familiarity of home. Stately oaks and pecan trees dot the grounds. The Delta Queen still blows its horn in tribute to them as it glides down the Mississippi. Their friends and family members are buried in a large cemetery on the grounds, many of them identified only by patient number, unwilling even in death to reveal their identities.

Once, patients arrived at this place in handcuffs and shackles, accompanied by armed guards, their only crime that they had contracted the disfiguring illness now known as Hansen’s disease. Until effective treatment became available, its victims faced a grim future. As soon as the earliest symptoms--numb pale spots of skin or small skin nodules--were detected, they knew what was ahead: disfigurement, withering of hands and feet, disability and sometimes blindness.

Strict public-health laws dictated well into the 1960s what happened to those with leprosy. They were forbidden to ride on public transportation, to fly over certain states, to use public restrooms or to live freely in society. Children were torn from their families. Husbands and wives were separated. Babies born at the facility were given up for adoption. The basic freedoms that most Americans take for granted were denied them.

The rules that governed their lives were simple: Forced detainment at Carville until they tested negative for active leprosy on 12 consecutive tests, spaced at least a month apart. One positive result, indicating the presence of the m. leprae bacillus, dictated that testing had to start from the beginning. For many, that meant a lifetime of institutionalization.

Leprosy, which still accounts for about 500,000 new cases worldwide each year, is caused by a mycobacterium found in the same family of organisms that produces tuberculosis. No one knows how it spreads, but 95% of the population is naturally immune to the disease, making it one of the least contagious of all the infectious diseases.

The organism burrows into peripheral nerves and kills them, causing hands and feet to grow numb. With feeling gone, sufferers injure themselves in everyday activities. If it is left untreated, ulcers and sores develop. Bones gradually dissolve, creating the appearance of a lost limb, claw-like hands or stumpy feet.

Under the terms of the new law, long-term Carville patients will be entitled to lifelong free medical care for their Hansen’s disease symptoms and a $33,000 annual stipend that they can use to live anywhere they choose. They are being encouraged to move within three years. A search is under way for a smaller facility in Baton Rouge, about 20 miles away.

“They will get good care at another facility, but these people have a feeling towards Carville that is hard to describe,” said former U.S. Surgeon General C. Everett Koop.

“Some of these people have been there since they were children. They don’t like to be moved.”