As part of the Global Appeal 2025 to End Stigma and Discrimination against Persons Affected by Leprosy held in India on Jan. 30, the Leprosy Bulletin interviewed two persons affected by leprosy living in Odisha to learn about their experiences. Shyam Sundar Patra discovered that he had leprosy at age 14. Forced to leave his family, he eventually found his way to a colony in the capital city of Bhubaneswar, where he has been living for nearly 50 years. Sister Bimala Khajur is a religious nun belonging to the Congregation of the Sacred Hearts of Jesus and Mary and a social worker who received her diagnosis in 2023. She recently completed one year of multidrug therapy (MDT). This article highlights three themes that came up in the one-hour conversation.

Fear of transmission

When Sister Bimala Khajur received her diagnosis, her awareness of India’s “save yourself and others” COVID-19 campaign was fresh and she wondered what the equivalent might be for leprosy. Fearing that she might be contagious, she followed pandemic protocol and isolated herself. Later, as she learned more and completed her MDT treatment, she grew in confidence that she would not put others at risk, and she informed them that she could be with them, hug them, and eat with them. But some people still fear transmission, and she has been prohibited from joining some meetings and programs. She wishes that she had an official document with information about stages of the disease and clear instructions about actions to take so that both she and those around her could feel equally comfortable about her participation. 

Desire to keep community intact

Decades ago, when S. S. Patra found out that he had leprosy, his entire family was denied access to communal resources. To help his family, he had to leave. At first, he depended on begging to survive, but with help from a priest who advised him to cultivate a trade and gave him 500 rupees to get started, he bought a grocery shop in a leprosy colony. In the colony, he was able to marry and raise five children. All his children are now married, and his four sons are raising their families in the colony, while working outside of it. 

S. S. Patra is familiar with the argument that persons affected by leprosy who have been cured should be rehabilitated and the colonies eliminated, but he strongly disagrees. He does not see breaking up the community as a solution. In his view, the main issue is land rights. The community already exists, and so what is needed is the security that would come from legal recognition of the right to be on the land. This security would increase the motivation of all stakeholders to improve the colony’s infrastructure and services.

Downsides of linking support to visible disability

Related to the problem of lack of land rights, many people in leprosy colonies live in vulnerable (kutcha) structures. In 2021, the Odisha government decided to provide homestead land and sturdy, all-weather (pucca) houses with a latrine to eligible cured leprosy persons with 40% or more disability within two months after completion of their treatment [1]. While this decision helps a small subset of persons affected by leprosy, it does not help those who were cured long ago or those who have disabilities that are less visible. S. S. Patra described how the percentage of disability that a person is able to demonstrate also affects the amount of monthly pension payments.

Sister Bimala Khajur explained that, although she has completed her MDT treatment and does not have any visible disabilities, she is still experiencing various complications related to nerves and facial muscles. Pain and weakness prevent her from working a full number of hours.

Overall, the situation for persons affected by leprosy in Odisha has improved in comparison to the past because of MDT and access to the treatment through government hospitals. But as Sister Bimala Khajur is finding, expertise and treatments to help with reactions and complications may be lacking. At the same time that there is too much fear of transmission, there is too little awareness that the physical and emotional effects of leprosy can be invisible, and they can last long after the disease has been cured.

References

1. “Odisha government to provide land, pucca house for cured leprosy patients.” The New Indian Express. https://www.newindianexpress.com/states/odisha/2021/Nov/27/odisha-government-to-provide-land-pucca-house-for-cured-leprosy-patients-2388741.html. Accessed March 1, 2025.