The leprosy story: India’s path towards a stigma-free society Premium
From growing up as a child shunned in her school to becoming a single mother fighting to secure a future for her son, Rubina Singh, a 48-year-old single mother has had a journey that exemplifies the strength required to rise above prejudice.
Ms. Singh grew up in a leprosy colony located in Patel Nagar, New Delhi. “In school, we had to sit on the floor, apart from the other students. People didn’t want to talk to us, let alone sit near us,” recalled Ms. Singh. She lost her parents to leprosy but completed her education up to class 10 before her marriage brought an end to her schooling. Her challenges however, increased when she lost her husband a year after the birth of her son.
Her story is far from ordinary: it mirrors the life of many others who grew up with her in the colony.
People who are affected by the disease are often misunderstood. “The fear surrounding leprosy is compounded by its visible effects, making it harder to overcome”, said Mervyn Basil, communications specialist at NGO Until No Leprosy Remains-India (NLR-India). This misunderstanding is common and persists in many areas, which often leads to social ostracisation and the denial of basic human rights. For many like Singh, the fight is not just against the disease but also against the societal prejudice that follows.
One of the major focus areas is to train doctors and other healthcare workers to recognise and treat the disease effectively. “With cases having declined over the decades, there is now limited opportunity to study and observe leprosy’s signs, symptoms, diagnosis, and treatment. It therefore remains crucial to train new doctors on recognising its subtle signs”, said Ashok Agarwal, CEO of NLR-India.
In rural areas, even today, many individuals affected by leprosy hesitate to seek medical attention due to the fear of being ostracised which contributes to a delay in treatment. The vastness and diversity in India also means that approaches can vary across regions. “ASHAs play a vital role in identifying cases during home visits and referring them for diagnosis. However, in some areas, challenges in case identification and reporting can affect the overall response to leprosy,” said Dr. Agarwal.
Several foundations across India are also educating the public, working on grassroot campaigns to raise awareness about the curable nature of the disease and ensuring that people affected by leprosy receive the help they need to reintegrate into the society. However, despite significant process made, there are still challenges to overcome.
The stigma surrounding leprosy is not easily erased. “We educate people in different communities, explaining that it is not something you will immediately catch by touch. It is curable and there is no need to discriminate”, said Mr. Basil. Programmes such as empowering the youth through vocational training, and healthcare camps also aim to create awareness and acceptance within communities. “Through NLR’s livelihood programmes, I learned sewing and tailoring and started selling sanitary pads to support my family”, said Ms. Singh.
Earlier, children from leprosy affected families were denied admissions to the schools. Even if they got in, once people found out about their parents, they’d isolate these kids”, says Mr. Basil. While this aspect has now improved, the fear of stigma continues to prevents many individuals from disclosing their condition or seeking treatment.
“The involvement of the private sector in detecting and reporting cases is very important, as many cases come directly to the private practitioners,” said Dr. Agarwal.
On the medical front, access to leprosy treatment in rural India has significantly improved. “In the past, small dispensaries were scarce, but now, at Primary Health Centers (PHCs), medications are readily available. A strip of medicines costs just ₹10–₹12, and many NGOs provide medicines for free through donations,” explained Mr. Basil. “The government says that leprosy has been eliminated, so people assume that it is no longer a problem. But, elimination does not mean that it is gone. If even one case remains undetected, it can spread again”, he added.
While the journey to fully eradicating leprosy across India is ongoing, there is hope as many others affected by leprosy fight for a better future. India is making steady strides toward a leprosy-free society. guided by the NSP’s comprehensive plan. “Even if we don’t fully reach the 2027 target, achieving 10% or 20% of it would still be a significant accomplishment,” said Dr. Agarwal. Simultaneously, ongoing awareness campaigns, improved healthcare infrastructure and the dedicated work of foundations are slowly bringing about a change in public perception.
Some names have been changed to protect privacy
(Aditya Ansh is an independent media reporter based in New Delhi. His works have been featured in Indiaspend and Feminism in India and cover environment, climate, health, education and human rights. adityaansh30@gmail.com)
Published - December 20, 2024 10:17 pm IST
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