Leprosy in India: Patients suffer neglect and social stigma more than the disease

India, being a tropical country, is endemic to various neglected tropical diseases, one such is leprosy, mentioned in Indian scriptural texts since ages, the disease holds high relevance in Indian wellness context. Despite this consistent concern about the disease, highest Leprosy cases are reported in India. We Indians have collectively tried our level best to ensure the eradication of this NTD, working at public and community levels, ever since the independence of India, however various issues have not been discussed in detail. The patients continue to suffer social stigma and neglect. Many times the disease is seen as a fruit of one’s karma and hence unhelpable, which is a fallacious interpretation of both the traditional-narrative and the science. The Indian government is trying its best to ensure “Leprosy Mukt Bharat” by 2027, three years ahead of SDG goals. In fact, the theme for this year’s anti-leprosy campaign is - “Let us fight Leprosy and make Leprosy a history”. Union health minister Mansukh Mandaviya has reiterated Mahatma Gandhi’s enduring concern for people affected with leprosy. “His (Mahatma Gandhi’s) vision was not only to treat them but also to mainstream them in our society. Our efforts to eliminate leprosy from this country under National Leprosy Eradication Programme is a great tribute to his vision. We were successful in achieving a prevalence rate of 1 case per 10,000 population at the national level in 2005. The need of the hour is consistent efforts to eliminate Leprosy. It is a curable disease, however, if it is not detected and treated at the early stage, it can cause permanent disabilities and deformities among the affected person, leading to discrimination of such persons and their family members in the community,” had said the minister on national anti-leprosy day. “Under the visionary leadership of Prime Minister Narendra Modi, we have adopted comprehensive measures for the prevention of the development of disease. From the year 2016, renewed efforts were made for actively detecting cases under the Leprosy Case Detection Campaign (LCDC),” he added (inputs from ANI). To discuss all these issues in detail we have with us, Deepak Kapur, Head, Rotary Club Alliance for Leprosy Control. Excerpts of the interview: India faces a high burden of leprosy – How do you look at it? My friend based in London brought to my attention the status of Leprosy at The 2012 London Declaration on Neglected Tropical Diseases. Like the majority of people in India, I believed that leprosy does not impact the Indian population but was shocked to learn that more than 60 per cent of global cases today come from India. The government has been working to control leprosy since 1955 with their National Leprosy Control Programme (NLCP). Since then, several governmental and non-governmental initiatives helped the leprosy cases to decline, but with the onset of other diseases like Covid, the emphasis on leprosy control faltered. The rising cases of leprosy in India demand urgent attention as the disease is highly communicable and can affect a person’s life physically and socially. [caption id=“attachment_12337022” align=“alignnone” width=“378”] Deepak Kapur, Head, Rotary Club Alliance for Leprosy Control[/caption] How does this disease affect the life of people mentally and physically? Leprosy has severe ramifications on patients both physically and mentally. The disease makes the extremities of the body wither away- such as the fingers, and toes, ulcers start to develop in the soles of feet, and eyesight deteriorates. Mentally it is perhaps the most devastating disease of all. If a person gets leprosy, often they can’t even dare to look at themselves in the mirror. Most leprosy patients are ostracised and neglected by their family members and society. In fact, employment is next to impossible, so they naturally gravitate to leprosy colonies where the other patients of leprosy are living. Which age group or section of people is most vulnerable to leprosy? Anybody can contract leprosy- age, sex, and economic status are no bar. You could be harbouring the bacteria for three decades without the disease manifesting itself. It is a universal illness, and anyone can contract it at any time unless their immunity levels are high. What are the major social stigmas faced by the patients of leprosy? Leprosy patients still face the same stigma that society has made them feel since biblical times. Ostracisation, being treated as cursed, and restraints on employment are rampant. What role civil society organisations, like your club, can play in the fight against leprosy? Civil society organisations like Rotary which has a long history of service to humanity since 1905 can help make this war against leprosy into a people’s cause. For example, Rotary with 1.2 billion members worldwide has played a leading role in polio eradication by helping to make the fight against polio a global fight. It partners with WHO, UNICEF, the Centers for Disease Control, the Gates Foundation, and the Global vaccine alliance to make sure that the last remnants of polio are eliminated. For Leprosy, an alliance of Rotary Clubs in Delhi led by the Rotary Club of Delhi South has begun playing the catalyst role in this war. It is doing this in four different ways-

• By creating awareness that Leprosy is a disease that can strike anywhere and that you must learn how to recognise it. Free treatment of the disease is available, and within 72 hours or less, you can become a non-transmitter of the disease.
• By training paramedical staff to recognise the symptoms of leprosy.
• Palliative care. For instance, the Rotary Club Alliance provided for those inmates of leprosy colonies who had no means of survival during the Covid time. Vans were purchased specially for the purpose to go from one leprosy colony to another to provide bandaging facilities, treatment of sores, and the screening of all the inmates.
• Finally, in collaboration with the government, this alliance conducts medical camps with the objective to find the unlisted cases of leprosy, which is known as active case finding.

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