Leprosy, one of humanity’s oldest diseases, continues to pose significant challenges in India despite advances in medical science and treatment. Beyond the physical toll, it carries deep social stigma, affecting not just the patient but their families and communities. With India accounting for over 50 per cent of the world’s new leprosy cases annually, it’s time for collective action to eliminate this preventable and curable disease.
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The stigma attached to leprosy poses a significant barrier to its elimination. This is primarily due to the prevalent myths. Its depiction as a divine curse in the scriptures has perpetuated stigma through generations. According to an NLR India study, more than 50 per cent of people affected by leprosy-related disabilities reported being avoided by others aware of their condition; around 42 per cent lost friendships, and a similar proportion felt ashamed to disclose their disease. Even today, discriminatory attitudes persist in schools, workplaces, and neighbourhoods. Many affected individuals travel to distant health centres, sometimes even to other states, to avoid being ostracised.
India’s legal system still harbours nearly 90 discriminatory laws that restrain the mobility of leprosy-affected persons in different sectors. Notably, most of them are state laws applicable in the respective states.
Leprosy, caused by the bacterium Mycobacterium leprae, spreads through prolonged close contact with untreated patients. Contrary to myths, it’s not hereditary and does not spread through touch or sex. Symptoms include discoloured, numb skin patches, and if untreated, can lead to severe disabilities, including disfigurement of the face and limbs.
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India’s burden is enormous. While the country has 17.38 per cent of the world’s population, it accounts for over half of global new cases annually — around 100,000, including 5,000 cases with disabilities at diagnosis. Many more develop disabilities later. Disabilities can result in ulcerated, oozing wounds that cause immense physical and emotional suffering, compounded by social exclusion.
A Roadmap for Change
Leprosy is preventable, treatable, and curable. The government’s National Strategic Plan (NSP), launched in January 2023, outlines a comprehensive roadmap to eliminate the disease. Key initiatives include early detection, treatment, contact tracing, and preventive medication for eligible contacts. A single dose of rifampicin can prevent transmission, while multi-drug therapy (MDT) cures the disease within 6-12 months, rendering patients non-infectious after the first dose.
However, success depends on more than government action. The affected individuals, healthcare professionals, NGOs, donors, the media, and society at large must play their roles.
Empowering the affected individuals through education, support networks, and accessible healthcare is crucial. Communities must foster an environment where seeking treatment is encouraged, not shunned. Self-stigma remains a significant hurdle. Many individuals internalise societal discrimination, making them hesitant to seek help. Women, in particular, face unique challenges. Stories of women being abandoned by their families after diagnosis are not uncommon.
India’s extensive government public healthcare system is the backbone of leprosy eradication efforts. The central government’s leadership—from setting guidelines to allocating budgets—is vital. The NSP mandates regular training for health workers to improve early diagnosis and treatment. Around 200 of India’s 788 districts remain high-burden areas, requiring targeted interventions. GIS mapping of new cases and persons with disabilities can optimise resource delivery, ensuring no one is left behind.
NGOs bridge the gap between communities and public health programs. Over the years, NGOs, along with the government, have set up high-quality treatment and surgical facilities, piloted leprosy prevention intervention, disability care models, urban leprosy programmes, disability-inclusive development, helpline, etc. The unique leprosy helpline calls the affected persons every two weeks. A recent innovation is the development of a point-of-care diagnostic test—which has the potential to detect leprosy during its incubation period. These innovations can be game-changers. NGOs must continue collaborating with the government and leveraging data analysis to sharpen their impact.
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The high-net-worth individuals and corporate donors can make leprosy elimination a priority in their funding agendas. Adopting high-burden districts and providing resources for comprehensive interventions can accelerate progress. Supporting research, infrastructure, and community programmes will bring us closer to realising Mahatma Gandhi’s vision of a leprosy-free India.
The media have a critical role in spreading awareness and dispelling myths. By highlighting success stories and encouraging early diagnosis, the media can reduce stigma and foster a culture of compassion. Campaigns should emphasise that leprosy transmission requires prolonged exposure and can be prevented and cured with modern medicine.
Society must replace fear and discrimination with understanding and support. Schools, workplaces, and communities should become inclusive spaces where affected individuals can thrive. Religious and cultural beliefs that perpetuate myths about leprosy must give way to scientific knowledge. Volunteering with NGOs or mentoring affected families can help break the isolation they often face. Above all, compassion and acceptance are key. Together, we can make leprosy a disease of the past and build a more inclusive and compassionate India.
(The writer is CEO, NLR foundation)
