Research Article: The Stigmatization of Leprosy in India and Its Impact on Future Approaches to Elimination and Control

Date Published: January 30, 2008

Publisher: Public Library of Science

Author(s): Jesse T. Jacob, Carlos Franco-Paredes, Charles King

Abstract: None

Partial Text: Traditionally, India holds the unenviable position of the origin of leprosy. The disease is thought to have then spread, via trade and war, to China, Egypt, and the Middle East, and later to Europe and the Americas. From antiquity to modernity, Indian society treated leprosy singularly with respect to custom and law, a response shaped by both scientific knowledge and cultural attitudes. India’s future challenges in leprosy control include multiple systems of medicine, stigma, and educational knowledge gaps. By looking through the historical window of leprosy in India, we propose that continued success in elimination and control requires a holistic approach addressing these issues (Image 1).

Early texts, including the Atharava Veda (circa 2000 BC) and the Laws of Manu (1500 BC), mention various skin diseases translated as leprosy. The Laws prohibited contact with those affected by leprosy and punished those who married into their families, effectively ostracizing those with the disease for their past sins [1]. The Sushruta Samhita (600 BC) recommended treating leprosy—or kushtha, meaning “eating away” in Sanskrit—with oil derived from the chaulmoogra tree; this remained a mainstay of treatment until the introduction of sulfones [2].

Soon after their arrival, Europeans described the uncommon practice of ritual suicide by those affected by leprosy, who were often assisted by their families. Though Hinduism generally considers suicide a sin, for leprosy it was not [4]. Christians too associated leprosy with sin. Struck by the scale of this Biblical disease, Europeans, especially missionaries, singled it out from a myriad of tropical infections. They often described the most dramatic forms of disfiguring leprosy, evoking fear of an “imperial danger”: leprosy reaching the British Isles. The public pressured the colonial government for the segregation of people with leprosy.

Disease control marked the Indian government’s initial approach, starting in 1955 with the creation of the National Leprosy Control Program for surveillance. In 1983, with the availability curative multi-drug therapy, the government changed the name to the National Leprosy Elimination Program (NLEP), with a focus on treatment. Starting in 1997, the government conducted several modified leprosy elimination campaigns; these short, concentrated bursts of statewide case detection activities included orientation of all village-level workers and volunteers on leprosy, house-to-house searches in specified areas, and awareness programs using mass media, school activities, and community meetings. State governments also began integrating leprosy care into their general health systems starting in 1997, moving from vertical control programs to horizontal health services, an intervention shown to decrease the stigma associated with leprosy due to family counseling and community outreach [7].

The history of leprosy in India offers insights into one of the world’s most misunderstood diseases. Furthermore, leprosy control and elimination in India still faces many challenges. Although many of the theoretical and practical approaches of the past have been discarded, their careful examination provides insights for the future. Sustaining the gains made so far and further reducing the disease burden in India require an innovative, holistic approach that includes ongoing education, efforts to identify interventions to dispel stigma, and the inclusion of nonallopathic practitioners in disease control programs.



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