International Leprosy Association -
History of Leprosy

International Leprosy Association -
History of Leprosy

The United States of America

Leprosy spread to the southern states of the United States between the sixteenth and eighteenth centuries. The first known cases of leprosy in Louisiana were in 1758. In 1866, French immigrants with leprosy were recorded in Louisiana, and leprosy was recorded in San Francisco in 1875.

Carville

In 1921, The United States Public Health Service (USPHS) took over the state-controlled leprosarium in Louisiana; it was renamed the United States Marine Hospital Number 66, the National Leprosarium of the United States. Through most of the twentieth century, the National Leprosarium was known as Carville. It was the main institution caring for leprosy patients in the continental United States; at its peak, it housed 400 patients. It was also at the forefront of leprosy research: under the directorship of Guy Henry Faget in the 1940s, the new sulfone drugs were trialled on volunteer patients. Sulfone therapy proved to be the most effective leprosy treatment yet available, and it was quickly adopted by many leprosy institutions worldwide as a replacement for chaulmoogra oil treatment.

In 1981, the USPHS National Outreach Program set up regional Hansen’s disease clinics to provide outpatient care. There were eleven Community Health Programs in Boston, Chicago, Los Angeles, Miami, New York, Puerto Rico, San Diego, San Francisco, Seattle, Texas and Hawaii.

Penikese Island

Late in the 19th century, a number of leprosy cases appeared in the United States as a result of immigration from Turkey, Russia, the Middle East, and Asia. The state of Massachusetts opened a state leprosarium on Penikese Island, 14 miles off New Bedford, on Nov. 18, 1905. This leprosarium would remain open for sixteen years. Fourteen people were sent there within hours of a positive diagnosis of leprosy. There, under state health law, they were bound to remain until certified as cured. They died and were buried there after being subjected to experiments that may well have hastened their demise. The patients spoke Russian, Hebrew, Portuguese, Japanese, Chinese, and Turkish. Few spoke English. The leprosarium buildings were burned and dynamited in 1921, shortly after the hospital was shut down, and the surviving patients were transported in sealed trains from New Bedford to the federal hospital in Carville.

Turning points

One of the most outstanding events that occurred in the United States was due to the efforts of Carville patient Stanley Stein, who conducted a sustained public campaign against the stigmatisation of people with leprosy. These efforts had worldwide repercussions. In 1948, at the Fifth International Leprosy Congress, in Havana, a resolution (PDF) was passed recommending that use of the word “leper” be abandoned. Stanley Stein writes this: “the Havana Congress agreed unanimously ‘that the use of the term ‘leper’ in designation of the patient with leprosy be abandoned, and the person suffering from the disease be designated ‘leprosy patient'”. (Alone No Longer 331)

The Fifteenth International Leprosy Association’s Leprosy Congress was held in Orlando, from August 28 to September 5, in 1993. M J Colston came away with the overriding impression that the Congress marked a “turning point.” He felt that “the emphasis is shifting” and while the new drug regimens and the research into vaccines was very interesting, something else equally significant was happening: “The reduction in prevalence in most leprosy-endemic areas will bring new challenges to everyone involved in leprosy research.” He felt that there was a delicate dividing line between triumph and complacency. (Leprosy Review)

Sources

M J Colston, Editorial: XIV International Leprosy Congress Orlando, Florida, USA 29 August – 4 September 1993 Leprosy Review 64: 367.

Zachary Gussow and George Tracy. “Status, Ideology, and Adaptation to Stigmatized Illness: A Study of Leprosy.” Human Organization 27.4 (1968): 316-325.

Hartnett, Ken. “Lessons to be learned from Penikese experience. South Coast Today.

Michelle T. Moran, Colonizing Leprosy: Imperialism and the Politics of Public Health in the United States, (Chapel Hill: University of North Carolina Press, 2007).