Many believe that leprosy is a disease arising out of poverty. However, the first person I met who suffered from leprosy was the CEO of a financial services company. She was educated and accomplished, hailing from a prosperous background.
She contracted leprosy as a young woman, received the best treatment money could buy, and recovered within three years. She was left with the mildest of clawing, noticeable only if pointed out. Despite all this, she said that every night, she has several invisible guests at her dinner table – insecurity, fear, self-doubt and pain. As she narrated stories of discrimination, prejudice and stigmatization, it was evident that she had never really fully recovered.
Leprosy is a complex disease. Unlike other communicable diseases, its effects usually last a lifetime. Nowhere in the world is this more pronounced than India. Today, leprosy affects approximately 150,000 people in India, which carries roughly 58% of the global leprosy burden. Of this, nearly 10% of all new cases occur among children. Given this data, it might surprise many that in 2005, India announced that it had eliminated leprosy. This is because, according to the target set by the World Health Organization, countries can announce elimination when there are fewer than one case for every 10,000 people. This decision by the Indian government meant that vital funding needed to diagnose, treat and rehabilitate those affected by leprosy and their families was taken away.
Imagine a situation where you cannot close your eyelids and you are forced to tie a rag around your eyes whenever you want to fall asleep. Imagine that you can no longer lift objects because your fingers have clawed. Imagine that you no longer feel burns or any pain on your limbs. This is leprosy in its many forms. Leprosy leads to anaesthesia (loss of sensation). People with leprosy cannot feel pain in those areas affected by the disease. They don’t notice if they cut their feet walking or burn their hand on a stove or flame. Without treatment, these injuries can become infected and lead to the life-changing disabilities commonly associated with leprosy.
Eradicating leprosy isn’t just about treating the disease and its symptoms, but about curing millennia of prejudice and discrimination. What most people don’t know is that 95% of the human population is naturally immune to leprosy. Development practitioners refer to the disease as the least contagious communicable disease. Yet, even today, there are more than 1,000 leper colonies in India, and many more the world over, where scores of leprosy-affected people are forced to live.
So, what does the fight to eradicate leprosy involve? The first challenge is to support an overburdened public healthcare system. In India, the Central Leprosy Division’s flagship National Leprosy Eradication Programme has been effective in reducing the disease burden in several Indian states. With support from non-profit organizations, private hospitals, and pharmaceutical companies, thousands of public healthcare staff have been upskilled and trained. Medication is now available in remote parts of the rural countryside, and mobile healthcare providers are solving the issue of access.
A second, greater, challenge is to overcome the issue of discrimination, stigmatization and prejudice. This can only be done through education, awareness and advocacy. All stakeholders play a role in helping people understand the disease. It is important to co-opt religious leaders and groups (an under-addressed group) in spreading awareness about leprosy. Often, fears are rooted in superstition, and religious leaders have the power to assuage these worries.
Discrimination takes many forms – one of them is loss of livelihood for persons affected by leprosy and related disabilities. Employers often dismiss leprosy-affected persons from jobs, owing to fear about the communicable nature of the disease. Loss of livelihood pushes families further into poverty, making treatment unaffordable.
It is important to acknowledge the role that the Government of India has played in the fight against leprosy. However, data on leprosy and disability in India is outdated. For strategic interventions to bear fruit, it’s important that the government work aggressively to understand the extent of the problem by collecting current data on those affected by leprosy and related disabilities.
In October 2014, the United Nations Human Rights council adopted a resolution encouraging governments to end discrimination against leprosy-affected people and their families. In India, there are 17 archaic laws discriminating against those affected by leprosy. These laws push people affected by leprosy to the margins of society.
Governments must lead the fight to end stigmatization and discrimination against those affected by leprosy. Rehabilitating people living in leper colonies into mainstream society is critical. Co-opting multiple stakeholders such as religious leaders, community leaders and prominent members of the community is vital in defeating discrimination forever.
At AIFO India, we work tirelessly to eradicate leprosy and related disabilities by not just providing medical interventions and support, but by rehabilitating individuals, families and communities of those affected by the disease. Over the two decades of our experience in India, we have impacted over 150,000 people from vulnerable communities across 10 states in India.
As partners of the National Leprosy Eradication Programme, the flagship programme of the Central Leprosy Division and the World Health Organization, our work sits at the ever evolving cross-section of grass root interventions, as well healthcare policy design.
Every year, International Leprosy Day is celebrated on January 30th, the anniversary of Mahatma Gandhi’s death.The Mahatma was a tireless advocate of people suffering from leprosy and, through his work, he showed the world that healing leprosy is about breaking down barriers and building a shared future on the foundation of empathy and compassion.
Author: Sanjana Govindan Jayadev, Country Head, AIFO, India. She is a World Economic Global Shaper in the Bangalore Hub.
Image: The hands of Ren’er Futie, a 70-year-old leper from the Yi ethnic minority, are pictured as he stands outside his house in Dayingpan Village in Yuexi County, Sichuan province December 15, 2007. REUTERS/Joe Chan