Leprosy has been a continuing challenge in Nepal for many years and despite years of efforts to eliminate the disease, stigma surrounding it remains an overwhelming barrier. As one of the top 10 countries (10th position as per WHO Report 2023) in the world with the highest number of leprosy cases, Nepal’s struggle to fully overcome this disease is far from over. The main obstacle to eliminating leprosy isn’t just the disease, it’s the strong stigma and misunderstanding, misconception and misinterpretation surrounding it. We need to face this problem directly. So, all the concerned stakeholders (local governments, social leaders, health workers and communities) need to take immediate action.
Leprosy was officially eliminated in Nepal in 2010 in terms of national prevalence, but it still exists severely in some districts and local levels, particularly in the western hilly areas and Tarai. In these areas, misconceptions and superstitions spread fear and discrimination. Similarly, regions bordering India also face the same problem, where the misconception of leprosy is deeply rooted. Each year, approximately 3,000 new cases are diagnosed in Nepal which shows that the battle is not yet won against leprosy. However, the road to eliminate leprosy goes beyond medical treatment. It also involves breaking the walls of shame, self-stigma, fear, isolation and misconception that the disease has created. Community mobilization and social awareness plays a crucial role in this effort.
Burden of stigma
The stigma surrounding leprosy is one of the greatest obstacles in eliminating it. In many rural areas of Nepal, leprosy is not only misunderstood but is often seen as a curse, a punishment for sins committed in a past life. These deeply rooted beliefs contribute to people with leprosy being marginalized, isolated, and excluded from their families and communities. This lack of awareness leads to misconceptions that leprosy is contagious, dangerous, or morally wrong, and as a result, individuals affected by leprosy are often excluded from social, economic, and cultural life. The people need to understand that leprosy is a curable disease caused by bacteria (Mycobacterium Lepre). Government has been providing free treatment through Multidrug Therapy (MDT) at all local health facilities. So, this disease is not contagious now.
Stigma is a silent but powerful force. People with leprosy are pushed to the borders of society, forced to suffer not only the physical pain of the disease but also the emotional scars of rejection from family and community. This stigma does more harm than the disease itself, preventing individuals from seeking timely treatment and, in many cases, leading to permanent disabilities that could have been avoided with early intervention.
Role of governments and community
Local governments need to play a vital role in addressing the stigma of leprosy. While the central government has aims with the National Leprosy Strategy and National Road Map to eliminate the disease by 2030, the real change must come at the grassroots level. Local governments are in the right position to execute the effective awareness activities and empower communities to reject harmful myths and accept the people living with leprosy together with their families and communities.
Local governments should prioritize awareness campaigns to demystify leprosy, emphasizing that it is a curable disease. Health facilities must focus on early case detection and timely treatment, ensuring that those affected feel safe to seek help without fear of discrimination. In Nepal, leprosy receives minimal attention at the local, provincial, and central levels. The federal government should play the initiative role to include leprosy awareness in the school curriculum from grade six to 12 as it will help break the stigma, promote early case identification and timely treatment, and ultimately contribute to the goal of eliminating leprosy by 2030. All the local governments need to allocate a certain amount of budget and set the plan on an annual basis until they attain the goal.
The fight against the stigma of leprosy cannot be won by the government alone. It requires the collective efforts of Non-Government Organizations (NGOs), international organizations, Community Based Organizations (CBOs), and community leaders. Such organizations play an important role in delivering the resources, capacity building of local health workers and other supports needed to effectively reach and assist affected communities/people. Stakeholders must also work together to create supportive networks that can help people living with leprosy reintegrate into their own society. This includes access to healthcare, legal rights, employment opportunities, vocational training, and other social services.
Perhaps the most important change must come from within the communities themselves. In Nepal’s rural areas, where the stigma of leprosy is most rooted, the role of local people would be very important. Communities need to take ownership of the fight against stigma, embracing compassion and empathy rather than unnecessary fear and worthless judgment.
When a neighbour, relative, or friend is diagnosed with leprosy, the response should be care and support, not rejection. It is important to change the way people view leprosy, moving from shame to solidarity. By having open conversations and debunking the myths that cause stigma, community members can create a safe and welcoming environment for everyone.
Battle to win
As Nepal is heading toward the goal of eliminating leprosy from all local levels by 2030, we must remember that the battle is not just about medical treatment, it’s about social transformation. Reducing stigma takes time, but it is not an impossible task. Educating communities nationwide can shift the paradigm of leprosy-related stigma and ultimately promote timely identification and treatment of leprosy cases which leads to attain the targeted goal on time.
It’s crucial that every person, from policymakers to community members need to understand that leprosy is not a punishment or a result of sin. It’s a medical condition that requires timely treatment, care, and understanding. Although leprosy is a medical concern, its associated stigma makes it a multi-sectoral issue that requires a multi-sectoral approach. By standing together as a nation, we can break the chains of stigma and ensure that no one is left behind due to a disease that is both preventable and curable. This is the time for action and change is now. Let us work together.Top of Form
Yam Bahadur GC is Leprosy Program Coordinator at International Nepal Fellowship (INF) Nepal.
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