“Leprosy does not kill, but the social discrimination, isolation and disability associated with the disease do not allow people to reach their potential, which is worse than death,” said Vagavathali Narsappa, who works with the Association of People Affected by Leprosy (APAL-India), a support group for leprosy patients.
The 55-year-old activist was abandoned by his parents at the age of nine when he was diagnosed with the disease. Left to fend for himself on the streets, the disease quickly spread to his fingers, which eventually had to be amputated.
“I met my wife at the leprosy hospital where we were both being treated. We have been blessed with two girls… we now work for APAL to support people afflicted with leprosy,” said Mr. Narsappa, who was recently in the Capital to participate in leprosy eradication-related programmes.
One of the biggest challenges in the battle against leprosy is that one in every 10 new leprosy patients is a child, he said, adding: “Unlike other diseases, leprosy does not have a vaccination or a preventive pill… the fact that leprosy can cause childhood disabilities makes awareness and timely treatment vital.”
A global appeal to raise awareness
Older patients are also vulnerable, with untreated ulcers often proving to be fatal. “The government and various organisations working in this area are doing their bit but the stigma attached to leprosy still remains… though people are more open to diagnosis and treatment now,” said Mr. Narsappa.
While welcoming the passing of a Bill excluding leprosy as grounds for divorce, the activist said that society’s mindset needs to change too.
“My dream and mission is to work towards zero disability, and for that to happen we need to create awareness, remove misconceptions about leprosy, have early detection and voluntary reporting. School curriculum should make children aware that early detection can prevent disability. People afflicted with leprosy should be made partners in policy making,” said Mr. Narsappa.
Last-mile efforts in leprosy eradication will need enabling environments where people afflicted by the disease feel comfortable in coming forward and seeking treatment, he said, adding that till this happens eradicating leprosy “will remain a distant dream for India”.
World Leprosy Day
In India, World Leprosy Day is celebrated on January 30 to commemorate the death anniversary of Mahatma Gandhi. The date was chosen by French humanitarian Raoul Follereau as a tribute to the life of the Mahatma, who had compassion for people afflicted with leprosy.
This year’s theme was ‘ending discrimination, stigma, and prejudice’.
Several reports have revealed that a majority of leprosy patients have experienced some form of social stigma and discrimination and nearly 50% end up suffering from mental health issues such as depression or anxiety.
Know the disease
Leprosy is a chronic infectious disease caused by Mycobacterium leprae
Leprosy is a major cause of physical disabilities. Timely detection and treatment of cases, before nerve damage sets in, is the most effective way of preventing disabilities due to the disease
The year 2000 marked the elimination of leprosy as a public health problem at the global level – a significant milestone in history. Elimination means the prevalence of less than one case per 10,000 population, globally. The elimination target was also achieved by most of the endemic countries at the national level by the end of 2005
Approximately 96% of leprosy cases are limited to 15 countries, which report more than 1,000 new cases annually
In the early 1980s, the World Health Organization introduced multidrug therapy (MDT), which revolutionised treatment of leprosy
MDT offers multiple benefits: The infected person ceases to be infective after a single dose; it is a complete treatment; and it reduces the risk of disabilities and consequent stigma