Saturday, July 10, 1999

Feds retreat from
demand that leprosy
facility be closed

As at Kalaupapa, Hansen's
patients at Carville, La., don't
really want to leave

'Quest for Dignity' has Hawaii ties

By Mary Adamski


Public health officials have backed off from their plan to evict residents of the national Hansen's disease facility at Carville, La.

Like the remaining patient population at Kalaupapa, the Carville residents who were segregated there as youngsters grew to consider the rambling complex on the Mississippi River a refuge in their old age.

"They told us we can stay, but they're doing things to discourage us," Sam Wilson, president of the Carville Patient Federation, said this week. "It's not the same place," he said, describing the new occupants who share the 330-acre site that was formerly the Gillis W. Long Hansen's Disease Center. It is now used by the National Guard and as a training center for at-risk youth.

Wilson credited a demonstration in March by patients and their supporters with influencing decision makers to rescind the June eviction deadline.

Honolulu resident Bernard Punikaia joined that march, calling it a human-rights statement about all the former residents who were denied freedom, the right to travel and the right to marry because of their disease.

Leprosy victims from all of the mainland states were forced into quarantine at Carville, which became the primary leprosy research center in the world. It developed the sulfone drug therapy which now controls the disease, ending its disfiguring and disabling damage to the body. The drugs led to an end to mandated isolation in the 1960s.

Finding that the dwindling population no longer justified the multimillion-dollar budget, the federal government decided to return the site to the state of Louisiana.

Like their Kalaupapa counterparts, the Carville residents were people who contracted the disease before the drug therapy was developed.

Kalaupapa residents have been assured of lifelong care by the state, which forced them into quarantine years ago.

"We're told we may stay for the rest of our life," said Wilson.

But like several others, he said he will take the alternative choice, a $33,000 annual tax-free stipend, and leave later this year. He and his wife will return to their native Trinidad.

Some 68 Hansen's disease patients are still living in the rent-free apartments, said Tanya Thomassie, spokeswoman for the U.S. Health Resources and Services Administration in Carville.

There is a nurse on duty 24 hours a day and a physician visits daily, but the major medical facility has been closed. Free transportation is provided to a Baton Rouge hospital, she said.

"From the beginning, the public health service has been trying to accommodate people because of compassion," Thomassie said. As they encountered resistance about the closing, "we said 'If there's a problem, why not solve the problem?' "

A leader in an international Hansen's disease advocacy organization voiced concern about the mix at the site -- elderly residents with military operations and juvenile rehabilitation services.

"How changed does a place have to be to stop being your home?" said Anwei Skinsnes Law, secretary of International Association for Integration, Dignity and Economic Advancement.

Law and Wilson both praised the Kalaupapa alternative. The remote Molokai peninsula is administered by the National Park Service and has been designated a National Historic Park.

"History will see a real difference," said Law. "There's the one way that they did it wrong and the one where they did it right."

‘Quest for Dignity’
has Hawaii ties

By Mary Adamski


A traveling exhibit about the accomplishments of Hansen's disease patients around the world will open in San Francisco next month with some Hawaii connections.

"Quest for Dignity," which premiered at the United Nations and was shown in Honolulu last summer, will be shown Aug. 19-26 at the Hearst International Exhibition Hall at the Presidio. The stories of some Hawaii residents are featured in the displays about modern victories over the disease.

Honolulu resident Bernard Punikaia, U.S. president of the sponsoring International Association for Integration, Dignity and Economic Advancement, will speak at the exhibit. He and IDEA secretary Anwei Skinsnes Law were participants in a San Francisco symposium last month by the Institute for Saving History and Ourselves. The organization uses the examples of history, such as the Holocaust and society's treatment of "outcasts" such as leprosy victims, to teach students about moral choices.

Law said the Hansen's Disease exhibit will borrow an idea from the AIDS quilt project which memorializes people with HIV/AIDS. Names of former leprosy patients will be sewn into a banner that will travel with the "Quest for Dignity" exhibit in showings around the world.

Dr. John Lewin, former Hawaii state health director and now chief executive of the California Medical Association, helped arrange the leprosy exhibit, as did former Honolulu residents John Howett, now with Eli Lilly pharmaceutical company, and the Rev. Hollinshead Knight, retired dean of St. Andrew's Cathedral.

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