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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: An Afternoon at Carville

A first visit by the Goodwill Ambassador to a place in Louisiana, USA, that occupies a very important position in the history of leprosy and leprosy research.

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Building that once housed patients at Carville

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Cartoon from 1946 by Carville patient Johnny Harmon, showing how miraculous patients thought Promin treatment was. (Originally published in The Star)

Carville, Louisiana (October 2)

At the beginning of October I paid my first ever visit to Carville, Louisiana. For over a century, from 1894 to 1999, Carville was the location of the only in-patient hospital in the continental United States for treating leprosy. Some of the most important leprosy research of the 20th century was carried out here, and it formed an extraordinary community of men and women forced into exile in their own country because they had leprosy.

Although the leprosarium has since closed and patient care functions have been transferred to nearby Baton Rouge, various buildings remain, and the story of those years is told in the impressive National Hansen's Disease (Leprosy) Museum.

Carville's association with leprosy began in 1894 when the Louisiana state government purchased a rundown sugar plantation on the banks of the Mississippi levee between Baton Rouge and New Orleans to house patients with the disease. The first arrivals at the "Louisiana Leper Home" were five men and two women. It was styled as "a place of refuge, not reproach, a place of treatment, not detention."

The choice of Louisiana was dictated by the fact that the state had quite a large number of leprosy patients; in time, however, this "leper home" for Louisiana would become a leprosarium for the whole country. This duly occurred in 1921, when the U.S. Public Health Service took over the running of the home. The name was changed to U.S. Marine Hospital No. 66, or the National Leprosarium of the United States.

On arrival, I was met by Dr. James L. Krahenbuhl, director of the National Hansen's Disease Programs, who showed me around. I was surprised at just how large Carville is. The leprosarium was situated on a 300-acre plot of land and in its time included an infirmary, patient and staff residences, a power plant, farm land for growing crops and raising dairy cattle, a school, a recreation center, Catholic and Protestant chapels, a cafeteria, library, post office, golf links and even a jail.

Perry is 101 this year and first came to Carville in 1936. He doesn't look his age.

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Display at the National Hansen's Disease Museum at Carville. On the left, with his back to the camera, is Pete.

To make it easier for the residents to move about, there were over two miles of covered walkways to connect patient residential housing, hospital offices, the infirmary, chapels and the recreation center. Patients used to ride bicycles along these corridors to travel between their residences and the infirmary. The small number of elderly residents who remain are more likely to use motorized wheel chairs, so it is very convenient for them to get about.

Some remarkable individuals passed their days at Carville as patients, and went on to record their experiences in print. Among its most famous residents was Stanley Stein, who was sent to Carville in 1931 and founded a newspaper called The Star ("Radiating the Light of Truth on Hansen's Disease"), which is still published today. Stein was a vocal crusader for the rights of persons affected by leprosy and wrote about his experiences in his autobiography, Alone No Longer. This book has been published in Japanese, and is one of the most inspiring books I have read. Another resident, Betty Martin, wrote Miracle at Carville, which entered the New York Times best-seller list. Just this year, Jose Ramirez Jr. published his moving account of his time at Carville, in Squint: My Journey with Leprosy. Jose, by the way, is now the editor of The Star.

Carville was a center of research and testing to find a cure for leprosy, as well as being a hospital for caring for people with the disease. It was at Carville that promin, a sulphone drug, was identified and used as a treatment for leprosy in 1941. In the 1950s, Dr. R. G. Cochrane pioneered the use of dapsone pills at Carville to treat the disease. While initially successful, the disease eventually developed a resistance to the drug, which is now used in combination with two other drugs in multidrug therapy.

As the 20th century progressed, the leprosarium underwent change. In 1986, it was renamed the Gilles W. Long Hansen's Disease (Leprosy) Center. Senator Long did much to support Carville and those who lived and worked there. In particular, he successfully lobbied Congress to ensure that Carville remained open when other Public Health Service facilities were closing.

In 1999, as the number of Carville's residents dwindled, the U.S. Department of Health and Human Services turned the property back over to the state of Louisiana, while allowing all long-term residents who wished to keep living there to do so. Today, a total of 13 remain. The state of Louisiana's Military Department now oversees the property, which is now known as the Gillis W. Long Center and used by the Louisiana National Guard. The facilities include a reformatory and a rehabilitation center for at-risk youth with a 98% success rate.

During the afternoon I toured the excellent National Hansen's Disease Museum. The museum was founded in 1996 to preserve the history of the site, commemorate those who lived at the National Leprosarium as patients and the medical community who served them. It tells patients stories, the history of the disease's treatment, and contains many cultural and medical artifacts from the more than 100-year history of the leprosarium. These include specially adapted scissors, eating utensils and keys, and special footwear known as the "Carville sandal."

The museum also serves the function of promoting understanding and treatment of Hansen's disease. According to Dr. Krahenbuhl, discrimination and prejudice persist in the United States, and there is a lot of misunderstanding about the disease, fuelled in part by the Internet. At the museum I met Simeon Peterson, known as Pete, who works as a guide. Pete is now 81 and has lived at Carville for 58 years.

Another gentleman I had the privilege of meeting was Perry Enriquez. Perry is 101 this year, and first came to Carville in 1936, just a few years after Stanley Stein. Originally from the Philippines, he arrived in the United States aged 18. Perry certainly doesn't look his age. When I asked him his secret, he said it was singing Frank Sinatra songs in front of people while playing the guitar one-handed, and not drinking or smoking.

Carville is home to some inspiring stories, but it also recalls darker times when patients were kept behind barbed wire and didn't have the right to vote. It occupies a very important place in the history of leprosy, and, having read so much about it, I am profoundly grateful that I have finally had the opportunity to visit.