Patients must leave
Hansen’s refuge
in Louisiana

Hawaii's Bernard Punikaia joins
the protest by others who
have the disease

By Mary Adamski
Star-Bulletin

Like those afflicted with Hansen's disease living out their lives today in safe, familiar Kalaupapa, Molokai, residents of the nation's only other leprosy treatment facility thought they had a refuge for life.

But this handful of people in Carville, La., face an uncertain future. The government has told them they have to leave.

The residents planned a march to the cemetery today to demonstrate against eviction that the U.S. government threatens to begin in June.

Bernard Punikaia of Honolulu and Kalaupapa joined supporters from several states and other countries including Japan and Korea in the demonstration. He said the march is a human rights statement about all the former Carville residents who were denied freedom and the right to vote, to travel and to marry because of their disease.

In Washington, officials said "innovative treatment" of Hansen's disease has made the 330-acre Carville facility no longer necessary, so a new facility was developed in Baton Rouge.

"As we developed the parameters for this relocation, we worked to ensure a compassionate transition for the resident patients at the Carville site," said Claude Earl Fox, administrator of the Health Resources and Services Administration, which oversees the facility.

Originally forced to live in Carville under quarantine, the population of senior citizens clings to the rambling complex of wooden buildings on the Mississippi River as home. Many of the 83 residents have lived there since they contracted the disease as children, before the development of drugs that stop its disfiguring and disabling damage to the body.

The Gillis W. Long Hansen's Disease Center opened 105 years ago and was operated since 1921 by the U.S. Public Health Service. It became the primary Hansen's disease research center in the world, where sulfone drugs were developed that led to an end to quarantine in the 1960s.

Finding that the dwindling population no longer justifies the multimillion-dollar budget, President Clinton signed a 1997 law returning the facility to the state of Louisiana for use as a training center for at-risk youth.

Simeon Peterson, 70, of the Carville Patient Federation, said that during negotiations last year for the transfer of the 307-acre site, "they told us that we could stay here until we die. Then they said we will have to move in two or three years. Now they say the infirmary will be moved this summer. Now we understand that we're going to stay for a little while."

Peterson said the patients have no objection to sharing the space with the planned facility for youths. "We're not against these kids coming here. It's 307 acres, they got plenty of room."

At the end of today's march is a well-tended cemetery with grave markers aligned in military precision. Some are inscribed with false names, the aliases that patients used to protect their families from the perceived taint that leprosy once carried.

Punikaia said: "When we are walking to the gravesite, it is to underscore that these people have husbands and wives here. Carville is home."

In a statement, Fox promised that the patients will continue to receive 'the best care and treatment ... for the rest of their lives.'

Forty-nine of the patients, he said, already have accepted the government's offer of a lifetime, tax-free stipend of $33,000 a year and free care. We are working with the other patients to meet their needs, he said.