World Leprosy Day: History and Stigma

Today is World Leprosy Day, which is internationally observed on the last Sunday of January each year. Recently I had the opportunity to reflect on the tragic history of those affected by leprosy (also known as Hansen’s disease) during my travels to Kaua’i. I also have been thinking about the historical portrayal of leprosy in the media, such as in the film and novel Papillon.

We recently went on a hike overlooking the Kalalau Valley where a harrowing conflict took place in 1893 as soldiers tried to forcibly remove a community of locals who had leprosy. Three soldiers were killed and 27 people were captured and taken away to the colony on Molokai as part of a misguided exile policy given the fear of leprosy.

I also recently re-watched the 1973 film Papillon and read the book of the same name, which further portray the historical fear surrounding leprosy. Escaping from the horrors of the bagne in French Guiana, the title character of the film Papillon, happens upon a leprosy colony (1). Papillon, played by Steve McQueen, tentatively accepts a cigar offered by the chief, who asks, "How did you know that I have dry leprosy? That it isn’t contagious?" "I didn't," replies Papillon, in hard-boiled McQueen fashion. An even more dramatic scene occurs in the semi-autobiographical novel Papillon by Henri Charrière, upon which the film is based. Here, the author arrives among the leprosy colony on the Ile Aux Pigeons, where he recounts an interaction with a man named La Puce:

“La Puce handed me the bowl, saying, ‘Don't worry. This bowl is only for visitors. No lepers drink from it.’

I took the bowl and drank, then rested it on my knee. It was then that I noticed a finger stuck to the bowl. I was just taking this in when La Puce said:

‘Damn, I've lost another finger. Where the devil is it?’

‘It's there,’ I said, showing him the bowl.

He pulled it off, threw it in the fire and said, ‘You can go on drinking. I have dry leprosy. I'm disintegrating piece by piece, but I'm not rotting. I'm not contagious’ (2).

These melodramatic scenes contribute to the stigma surrounding leprosy and are centered around the question of leprosy transmission. In the many years since the novel and film were created, we still have a surprisingly limited understanding of how leprosy is transmitted. The bacterium that causes leprosy, Mycobacterium leprae, can be found on skin as well as the nasal mucosa, pointing to possible contact and respiratory transmission (3). Zoonotic transmission from armadillos to humans has also been identified as another source of infection (4). Yet the predominant mode or factors influencing person-to-person transmission are not well characterized (3,4). Regardless, researchers now know that the disease is not very contagious and it is curable with antibiotics.

The classification of leprosy or Hansen’s disease has also changed over time, with the term “dry leprosy” referring to a possibly less contagious form of the disease, now known as tuberculoid leprosy. Meanwhile, “wet leprosy” is now more synonymous with lepromatous leprosy, which is the more severe form of the disease. Leprosy continues to be a significant public health issue, and understanding its epidemiology and transmission are critical to preventing additional infections. The historical stigma surrounding leprosy also continues to make treating and understanding this disease difficult. The sensational depictions in both the film and novel Papillon serve as a reminder of the stigma that patients with leprosy continue to face.

 

References:

1.     Papillon. Directed by Franklin J. Schaffner. United States, 1973. Film.

2.     Charrière, Henri. Papillon. Paris: Laffont, 1969. Print.

3.     Eichelmann K, González González SE, Salas-Alanis JC, Ocampo-Candiani J. Leprosy. An Update: Definition, Pathogenesis, Classification, Diagnosis, and Treatment. Actas Dermo-Sifiliográficas. 2013;104(7):554-563. doi:10.1016/J.ADENGL.2012.03.028

4.     Franco-Paredes C, Rodriguez-Morales AJ. Unsolved matters in leprosy: a descriptive review and call for further research. Ann Clin Microbiol Antimicrob. 2016;15(1):33. Published 2016 May 21. doi:10.1186/s12941-016-0149-x