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Director's Comments Transcript: Kalaupapa & Hansen's Disease 04/13/2009

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Greetings from the National Library of Medicine and

Regards to all our listeners!

I'm Rob Logan, Ph.D. senior staff National Library of Medicine substituting this week for Donald Lindberg, M.D, the Director of the U.S. National of Medicine.

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To listen to Dr. Lindberg's comments, click herelisten

Kalaupapa is a reminder of ignorance, medical research dissemination and challenges, the ancient stigma attached to Hansen's disease, as well as human courage -- all nestled within one of nature's majestic settings.

Kalaupapa is a remote peninsula on the Hawaiian island of Molokai where from 1866-1969 about 8,000 persons with Hansen's disease (also known as leprosy) were exiled and quarantined. Dr. Lindberg led an NLM team (including me) that recently visited some of the remaining patients and providers.

Hansen's disease is treated today by a multi-drug combination that succeeded sulfone medications, which provided the original breakthrough management of the infectious disease starting in the 1940s. The drugs brought a quick reduction of symptoms, significant improvements in a Hansen's disease patient's quality of life, and removed the possibility that a patient in treatment was contagious.

One of Kalaupapa's many ironies is Norwegian physician J.A. Hansen's 1873 discovery of the cause of leprosy was the same year that missionary Father Damien arrived and provided the initial comfort and support for exiled patients. (The state of Hawaii celebrates Father Damien day annually on April 15th and a well-reviewed film based on his life 'Molokai: The Story of Father Damien' is available.). Father Damien established a tradition of caring that improved patient lives and helped inspire the construction of U.S. government-sponsored treatment clinics after 1900. But until providers were able to use sulfone drug treatments in 1946 there was little anyone could do to thwart Hansen's disease.

The slow dissemination of both Hansen's findings and the availability of sulfone drugs to treat leprosy remind us of the importance of international diffusion of medical research and the public health consequences (sometimes unnecessarily tragic) of delays in research transmission and clinical availability.

Incidentally, Kalaupapa's 25 or so remaining patients are there because of a humanitarian decision in 1969 to give the resident/recovered Hansen's disease patients the option to live the rest of their lives on the peninsula. Today's Kalaupapa patients live there voluntarily and have access to an up-to-date medical facility.

The 1969 decision reversed a heartrending legacy starting in the 19th century when Hawaiians with Hansen's disease were sentenced, taken from their residences involuntarily, and forced to leave their families in exile. Before Father Damien's arrival in 1873, some Hansen's disease patients were literally dumped about a quarter mile at sea in perpetually strong surf with undertow -- and forced to swim or sink. Many never got to the shore.

The misery of the earlier patients and the beauty of the setting create an intense paradox. Kalaupapa is where trade winds, green 2,000 to 3,300+ foot cliffs, and rolling land meet the Pacific Ocean in a setting so unlike most contemporary urban and rural life that part of the primeval landscape was the backdrop for the opening of the popular movie, 'Jurassic Park.'

However, it should be noted that the laws and interventions that once exiled Hawaiian patients to Kalaupapa occurred in other parts of the world. A National Institute of Allergy and Infectious Diseases website notes Hansen's disease was feared and misunderstood in ancient China, Egypt, and India and leprosy patients often were isolated from the rest of the population within self-contained colonies.

Even in the 21st century, leprosy's centuries-old stigma is such that a senior Norwegian public health official recently reminded us that in Norway (where Dr. Hansen lived and worked), leprosy is rarely referred to as 'Hansen's disease' and Dr. Hansen's medical contributions retain a low public and professional profile.

A National Institute of Allergy and Infectious Diseases website explains leprosy is a chronic infectious disease. It is slow growing and incapable of living outside its host. Hansen's disease is treatable especially if discovered early and to repeat, persons undergoing treatment are neither contagious and they can lead a normal life. Symptoms include localized skin lesions that display some sensory loss, such as an unresponsiveness to touch or heat.

If untreated Hansen's disease can cause disfigurement and result in progressive, permanent damage to skin, nerves, eyes, and limbs. There were about 225,000 Hansen's disease cases reported in 109 nations in 2007. While there about 100-200 cases a year in the U.S., Health Day reported a resurgence in the southeastern U.S. at the end of last year.

There are remaining, unknown issues regarding Hansen's disease's detection, and the disease's transmission routes within the human body, as well as its incubation period. The aforementioned website from the National Institute of Allergy and Infectious Diseases reports some current Hansen's disease research focuses on genetic causes and new immunological interventions.

Research about Hansen's disease has been impeded by several challenges including an ability to grow the organism in a lab (which makes it more difficult to study than most bacteria) and its rareness in most animals. Since few animals carry leprosy, the medical model of studying affected animals and then, apply lessons to humans, is difficult to initiate. The latter illustrates yet another lesson associated with Hansen's disease � the challenge that occurs when the role of animal research in understanding a human disease is less available.

So Kalaupapa, now managed by the U.S. National Park Service, is loaded with lessons -- and is well worth the time to explore virtually. To find out more about Kalaupapa's past and present, type (K...A...L...A...U...P...A...P...A) in a search engine such as Google. We recommend the U.S. National Park Service's official website, which is one of the initial listings provided on most search engines.

To find more information on Hansen's disease, please type (H...A...N...S...E...N..'.S Disease) in the search box on's home page. A series of links pop up, including a recommended one to the National Institute of Allergy and Infectious Diseases' website that we mentioned previously.

Upon return, Kalaupapa's first lasting impression is the perseverance of today's patients, their dedicated health care providers, and of course, their courageous predecessors. While many of us do not think about prejudice in terms of illness, Kalaupapa also is a reminder of the extent that discrimination, indifference, isolation, and mass suffering inadvertently can be fostered by ignorance. The peninsula's graves are the torch of enlightenment.

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