By Mr Gaurab Sen is the Chief Executive Officer of the Sasakawa-India Leprosy Foundation (S-ILF) Leprosy is curable, yet its impact on individuals and families extends far beyond the disease itself. In India, over 750 leprosy colonies are home to thousands of people who have faced not only physical challenges but also the enduring stigma and isolation associated with the disease. To address their needs effectively, understanding their realities is essential. This is why the Sasakawa-India Leprosy Foundation (S-ILF) undertook a monumental task: physically verifying and documenting the conditions of every leprosy colony in the country.
This endeavour was no ordinary data collection exercise. Our team travelled to remote corners of India, often to locations that were hard to reach due to poor roads, limited connectivity, and challenging terrain. But these difficulties did not deter us. We were driven by a simple belief—true change begins with understanding the ground reality.
Through this process, we uncovered not just numbers but the human stories behind them. We saw colonies where basic amenities like clean water and electricity were a luxury. We met families struggling to make ends meet because employment opportunities were almost non-existent. We also saw children eager to learn but held back by the weight of prejudice and limited access to quality education.
This firsthand data is now the most comprehensive and accurate record of leprosy colonies in India. It includes information on the population, living conditions, access to healthcare, education levels, and economic opportunities in these colonies. By physically visiting each location, we ensured that the data truly reflects the lives of the people we are committed to supporting.
This initiative has already begun to make a difference. Armed with this knowledge, S-ILF has been able to design targeted interventions that address the specific needs of these communities. For example, we now know which areas lack schools or healthcare facilities and can advocate for improvements. Similarly, our skill development and livelihood programs are tailored to the unique challenges faced by residents in different regions.
The process also highlighted the resilience and determination of the people living in these colonies. Despite the hardships, many families expressed a strong desire to break free from the cycle of poverty and stigma. This determination inspires us to push harder in our mission.
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The government has been a strong ally in this journey. Initiatives like the National Leprosy Eradication Programme (NLEP) have laid the groundwork for progress. However, our data shows that there is still much to be done at the societal level, especially in bridging gaps in infrastructure and ensuring social inclusion.
Leprosy colonies are not just places on a map; they are communities of people with aspirations and potential. By physically visiting and documenting these colonies, we have laid the foundation for more effective interventions. But this is only the beginning.
India’s fight against leprosy is not just about eliminating a disease—it is about ensuring dignity, equality, and opportunity for all. With accurate data, stronger collaboration between government and civil society, and the resilience of the people themselves, we can make this vision a reality.
Anti-Leprosy Day reminds us of the importance of action rooted in empathy and understanding. At S-ILF, we are committed to walking that extra mile—both literally and figuratively—to support the communities we serve. Together, let us ensure that every individual affected by leprosy has a chance to lead a life of dignity and hope.
Mr Gaurab Sen is the Chief Executive Officer of the Sasakawa-India Leprosy Foundation (S-ILF), an organisation dedicated to supporting individuals and families affected by leprosy across India. He hails from Silchar, Assam and has more than two decades of experience in the development sector in India, which includes a short stint with the United Nations regional office in Bangkok, Thailand. He obtained his Master of Law (LL.M.) degree from Viadrina European University, Germany.
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