With some 150 cases a year, leprosy is not a public health problem, but stigma lingers.
|Yohei Sasakawa at Carville in October 2009|
In early October 2009 the National Hansen's Disease Programs (NHDP)1 was privileged to host Goodwill Ambassador Yohei Sasakawa. His time in Baton Rouge was very limited but Mr. Sasakawa was able to tour the NHDP research labs at Louisiana State University and the Carville Historic District2 including the NHDP Museum.
While touring the NHDP laboratory he was given a briefing on basic research projects tied to more pragmatic goals, such as prevention (vaccine) and early detection of leprosy, development of molecular tools to study transmission, the cell biology and mechanisms of leprosy pathogenesis and development of the armadillo as an approachable animal model for the full clinical and histopathological spectrum of human leprosy.
The NHDP relocated from Carville to Baton Rouge in 1999. While touring the historical site at Carville, Mr. Sasakawa made a point to visit the spot on the Mississippi River where the first seven patients, exiled from New Orleans, were brought upriver on a coal barge and put ashore in 1894. At the Carville cemetery, Mr. Sasakawa spent a few quiet moments of reflection at the grave of Carville's patient No. 1, the first of over 4,500 registered since 1921 when the program was federalized.
He toured the NHDP museum where the exhibits and artifacts display the fascinating history of the care and treatment provided at the national leprosarium, tangible evidence of the stigma of leprosy and of the community and social life the patients made for themselves while confined there. Mr. Sasakawa was pleased to be able to visit with several of the 13 elderly residents, formerly patients, who regard Carville as their home and still reside in space leased from the State of Louisiana.
With only about 150 new cases each year in the United States, leprosy is not a public health problem. However, the lack of awareness of leprosy often results in delayed diagnosis and delay in initiation of treatment. To address this predicament, which is or will ultimately become problematic in other low endemic countries, the NHDP offers seminars and mini-symposia on "Increasing the Awareness of Leprosy in the U.S."
The awareness seminars are aimed at private sector physicians and nurses to raise the index of suspicion that leprosy can present in people who have lived in endemic areas as well as patients residing in the Texas / Louisiana Gulf Coast, where infected armadillos may be a reservoir of leprosy bacilli. With no diagnostic test for pre-clinical disease, attendees are taught that a presumptive diagnosis can be made based on history and examination for the cardinal signs of leprosy - especially chronic skin lesions with sensory loss, enlarged peripheral nerves, loss of eyebrows, swollen, nodular ears or a history of painless wounds or burns. Attendees are instructed to take a biopsy from the lesion and send it to NHDP for histopathological confirmation of their presumptive diagnosis and staging of the disease for the appropriate treatment regimen.
With the free NHDP-provided anti-leprosy drugs and consultations with NHDP physicians and therapists, these patients can be readily managed by local physicians. For management of complications such as unresponsive reactions, advanced wound care or reconstructive surgery, patients can be referred to the NHDP for appropriate treatment and follow-up care as out-patients.
Mr. Sasakawa was interested in learning that the stigma attached to leprosy in other countries burdens many U.S. patients as well. As is the case elsewhere, the lack of understanding and unwarranted fear of leprosy indeed stigmatizes some individuals with leprosy. However, unlike the situation in many endemic countries, in the U.S. individuals with leprosy are not a homogeneous racial or cultural group so there is no typical U.S. attitude toward the stigma of the disease. Nevertheless, the individuals' concerns and the concerns of their friends, family, neighbors and employers can only be corrected through education that addresses these misconceptions. When local fears have arisen in the news media they have been rather effectively rebutted by facts issued by local and state health departments, often with NHDP input.
This was Mr. Sasakawa's first visit to Carville and the NHDP staff was delighted to finally meet the man who has made his life's work the elimination of leprosy and an end to discrimination faced by tens of millions of leprosy-affected people around the world.
1 The National Hansen's Disease Programs is the center of leprosy care, research and information in the U.S. Based in Baton Rouge, Louisiana, it is part of the U.S.
Department of Health and Human Services, Health Resources and Services Administration.
2 Carville, in Iberville County, LA, is the site of the former National Leprosarium.
James L. Krahenbuhl, Ph.D., is Director, National Hansen's Disease Programs, Health Resources and Services Administration, U.S. Department of Heath and Human Services.