Public Reaction to a Once Incurable Disease: Lessons Learned from Leprosy

The extensive histories of Hansen's disease (HD or leprosy) institutions at Kalaupapa/Kalawao (Moloka'i, Hawaii) and Carville (Iberville Parish, Louisiana) provide parallel case studies of the ways in which stigma and public fear can interfere with the treatment of and research on a chronic infectious disease. In 1904 President Theodore Roosevelt called for the establishment of a leprosy hospital and laboratory in Hawai'i. This later produced the U.S. Leprosy Investigation Station at Kalawao – “one of the most complete laboratory outfits in the world” – which opened under the direction of Harvard pathologist Dr. Walter R. Brinckerhoff on December 23, 1909. In spite of its promise, this facility closed on August 7, 1913 without producing any new insight into HD, due in large part to a woeful lack of consideration for the concerns of potential study subjects.

Three decades later the research program at Carville succeeded where the one at Kalaupapa had failed: it staged the first positive drug trials for leprosy in 1946, demonstrating the effectiveness of sulfones against Mycobacterium leprae, the causative bacterium of leprosy. This only happened after five decades of caring for people affected by HD. Carville opened as a state facility in 1894, neighbors being told it was an ostrich farm. Authority was transferred to the U.S. Public Health Service in 1921.

In our current era, in which people worldwide are keenly attuned to the dangers of emerging infectious diseases, we must not lose sight of the important lessons learned from leprosy.