Louisiana Facility Opened in 1894 : Leper Colony Chief Wants Work to Go On at New Site

Leprosy treatment has come a long way since the days when victims of the disfiguring disease were forcibly detained here.

Hansen’s disease can be treated almost exclusively on an outpatient basis now, and the director of the only leper colony in the continental United States plans to phase out the antiquated facility set up when victims were outcasts.

But Dr. John C. Duffy does not intend for the work of the Gillis W. Long Hansen’s Disease Research Center to be lost as its buildings age along with its 140 permanent patients, whose average age is 65. One outgrowth of leprosy research has led to help for diabetics, for example.

“Our research is outstanding, but our physical plant is a disaster,” said Duffy, citing an Office of Management and Budget study. He wants to move the center’s acute care, research and education functions to Baton Rouge.

The colony was opened in 1894 on a plantation when the state ferried five men and two women up the Mississippi River under cover of night from a New Orleans “pest house.” The federal government took control in 1921 and as many as 500 permanent residents were housed there during the 1930s. Most of the 330-acre complex of white, plantation-style buildings connected by a maze of enclosed walkways was built during the 1930s by the Works Progress Administration.

“It was a very different patient population,” Duffy said. “They were young, non-immigrant and they were mainstream Americans.”

Leprosy victims were arrested and forcibly detained here until after World War II when drugs were found that stopped the contagiousness and progression of the disease. Over time, fewer patients took up permanent residence.

The center, which has treated nearly 3,000 patients, survived when the Reagan Administration in 1984 closed seven other hospitals operated by the U.S. Public Health Service. The late U.S. Rep. Gillis W. Long spearheaded a drive to save it, but federal officials suggested research be done by either the Centers for Disease Control or the National Institutes of Health.

Leprosy, a bacterial infection, attacks the skin, flesh and nerves and is characterized by scabs, deformities and eventual loss of sensation. There are an estimated 6,000 to 10,000 U.S. cases, but up to 20 million worldwide.

“We will continue to receive men, women and children with this disease. It’s not an excludable disease,” Duffy said. “You can have it, and you can come into this country. Because the incubation period is sometimes six to eight years, somebody can come into this country with no idea they have the disease.”

Research needs to continue at the center, he said. For one thing, the work takes hundreds of armadillos, the only nonhuman animal that gets the disease, and “there is no room at either CDC or NIH for the armadillos.”

“All the experts are here. They are not in Bethesda or Atlanta.”

The center could take rental space in Baton Rouge without increasing its $18-million annual budget, he said.

All major advances in leprosy treatment--drugs, armadillo-related discoveries and two generations of vaccines with limited effectiveness--came from Carville’s researchers, said Duffy, who fears that research would be downgraded if it was moved to another agency.

“It’s one of the paradoxes of the disease that as far as scientists are concerned, their interest is almost always elsewhere than on this disease,” he said. “It’s not the kind of research for which you will win a Nobel Prize.

“As a result, the scientific community has paid scant attention to this disease. There is this group that has almost, in a sense, religiously dedicated their lives to this disease that are centered here.”

But even the worst cases discovered today can be handled through one of 11 regional treatment centers or by private doctors. For example, a victim whose disease progressed while he was confined in a Cambodian prison is undergoing outpatient treatment in San Francisco.

Thalidomide, notorious for causing congenital birth defects, is one drug that controls the disease. The drug of choice is diaminodiphenyl sulfone, first used in leprosy treatment in 1941 by Dr. Guy Faget at Carville. Two other drugs--rifampin and clofazamins--have been tested successfully in recent years, and research continues because the bacteria are becoming resistant to sulfone drugs.

New admissions to Carville are mostly patients with reactions to the drug treatment or have diagnostic problems. After a few weeks, they go home.

Research into the loss of feeling in hands and feet is being put to work for diabetics, who often require amputations after foot injuries stemming from the lack of sensation in their extremities.

About 500 diabetics have been treated here for foot problems like ulcers with special casts that allow healing and mobility, said Dr. Charles Patout, chief of rehabilitation. “The techniques we’ve developed here could reduce the number of amputations among diabetics, about 50,000 a year, by 90%.”

Of the diabetics treated at Carville, only two have undergone amputations.

Duffy would like to see more diabetics take advantage of Carville, but he admits that the stigma of leprosy may keep many patients from coming to the center. That is another reason to move treatment facilities to Baton Rouge.