From being shunned in school as a child to a single mother fighting for her son Rubina Singh’s future, the 48-year-old single mother has gone through a journey that proves the strength needed to transcend prejudice.
Ms. Singh grew up in a leprosy colony in Patel Nagar, New Delhi. “In school, we had to sit on the floor, separate from other students. People didn’t want to talk to us, let alone sit near us,” Ms. Singh recalled. She lost her parents to leprosy but completed her 10th grade education before her marriage ended her education. However, her challenges became even more severe when she lost her husband a year after her son was born.
Her story is extraordinary: it mirrors the lives of many others who grew up with her in the colonies.
Ongoing isolation and discrimination
For centuries, leprosy has carried a heavy social stigma: people affected by the disease often faced isolation and discrimination. In rural India, people affected by leprosy remain largely marginalized and denied access to basic human rights including education, healthcare and employment. Despite the World Health Organization (WHO) declaring leprosy “curable,” the stigma of leprosy persists, leading to ostracism not only from society but also from the families of those affected.
Although leprosy has been largely eradicated in many parts of the world, it remains a public health problem in India. India accounts for more than half of the world’s leprosy cases, with thousands of new cases reported every year, according to the World Health Organization. In 2022-23, more than 100,000 people were detected with leprosy in the country. However, the real problem is not just the number of cases, but the deep-seated stigma associated with the disease, which prevents people from seeking treatment.
People affected by this disease are often misunderstood. “Mervyn Basil, a communications specialist at the Indian NGO Till Leprosy No More, said the visible impact of leprosy exacerbates people’s fears about the disease, making it harder to overcome. (NLR-India). This misunderstanding is common and persistent in many areas, often leading to social exclusion and denial of basic human rights. For many like Singer, the battle is not only a battle against the disease but also against the social prejudices that come with it.
The role of non-governmental organizations in the prevention and treatment of leprosy
Several NGOs, including NLR-India, have been working tirelessly to combat the disease and social stigma. Their main focus is a three-pillar approach: supporting the implementation of India’s National Leprosy Eradication Program (NLEP), which includes capacity building of government health workers in identification, diagnosis, treatment, management and prevention; providing rehabilitation services and raising awareness. NLR India has initiated various projects to educate the public and healthcare professionals about the realities of leprosy.
One of the main areas of focus is training doctors and other health care workers to effectively identify and treat the disease. “With the number of cases declining over the decades, there are now limited opportunities to study and observe the signs, symptoms, diagnosis and treatment of leprosy. Therefore, training new doctors to recognize its subtle signs remains crucial,” said NLR India CEO Ashok Agarwal said.
Even today, in rural areas, many people with leprosy still hesitate to seek medical assistance for fear of being ostracized, leading to delays in treatment. India is large and diverse, which also means practices may differ in different 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 may affect the overall leprosy response,” Aga Dr. Val said.
Several foundations across India are also educating the public and running grassroots campaigns to raise awareness about the disease’s curability and ensure that people affected by leprosy get the help they need to reintegrate into society. However, despite significant progress, there are still challenges that need to be overcome.
The stigma of leprosy is not easy to eradicate. “We educate people in different communities and explain that this is not something you can pick up immediately by touch. It is treatable and there is no need to discriminate,” Mr Basil said. Programs such as empowering youth through vocational training and health camps also aim to increase awareness and acceptance in the community. “Through NLR’s livelihood project, I learned to sew and tailor and started selling sanitary napkins to support my family,” said Ms. Singh.
Earlier, children from leprosy families were denied admission to school. Even if they get in, once people find out about their parents, they isolate the children,” Mr Basil said. While this has now improved, fear of stigma still prevents many from disclosing their condition or Seek treatment.
What is India’s eradication target for 2027?
“Although India achieved the milestone of eliminating leprosy as a public health problem at the national level in 2005, many states and districts are yet to achieve this goal,” Mr. Basil said. In recent years, various interventions under the National Leprosy Control Program have led to a reduction in the number of newly detected leprosy cases. Cases dropped from 1,25,785 in 2014-15 to 75,394 in 2021-22, while the incidence of disability due to leprosy has also declined steadily.
In 2023, the government, together with different development partners, set a target of reducing the number of new leprosy cases by 50% within five years. The strategy, the National Strategic Plan and Roadmap for Leprosy 2023-2027 (NSP), provides direction for prioritizing activities that need to be implemented by all stakeholders.
“It is important for the private sector to be involved in detecting and reporting cases as many cases go directly to private practitioners,” Dr Agarwal said.
the road ahead
On the medical front, access to leprosy treatment has improved significantly in rural India. “In the past, there were few small pharmacies, but now, medicines are easily available at primary health centers (PHCs). The price of a medicine is only Rs 10 to Rs 12, and many NGOs provide medicines free of charge through donations,” explains Mr. Basil road. “The government says leprosy has been eliminated, so people think it’s no longer a problem. However, elimination doesn’t mean it’s gone. If even one case goes undetected, it can spread again,” he added.
While efforts to eradicate leprosy continue across India, there is still hope for many others affected by leprosy to strive for a better future. India is steadily moving towards a leprosy-free society. Be guided by NSP’s comprehensive plan. “Even if we don’t fully achieve the 2027 target, achieving 10 or 20 percent is still a significant achievement,” Dr. Agarwal said. Meanwhile, sustained awareness campaigns, improved medical infrastructure and dedicated work by foundations are slowly changing popular perceptions.
To protect privacy, some names have been changed
(Aditya Ansh is an independent media journalist based in New Delhi. His work has appeared in Indiaspend and Feminism in India, covering environment, climate, health, education and human rights. adityaansh30@gmail.com)
Published – December 20, 2024 at 10:17 pm (IST)