Producer Richard Cookson writes about meeting leprosy campaigner Narsappa during the making of India's Leprosy Heroes, and warns of the widespread and unfounded fear in India that leprosy is easy to catch.
Reporter Seyi Rhodes and I had been filming in the village all morning. We were following a leprosy campaigner, Narsappa, making a trip home to see his family.
Narsappa himself caught leprosy while living here more than three decades ago. Although he was just 10 years old, his neighbours demanded that he leave the village. Shortly afterwards, his father took him to a hospital two hours away and left him there. No one ever visited him and Narsappa never returned home.
Now 42, he lives in a leprosy colony several hours' drive away and campaigns on behalf of people affected by the disease. He wanted to take us back to the village to meet his family.
Narsappa's mother and father are now dead and we spend the morning talking to his brother and extended family. Before leaving, Seyi asked one last question: since Narsappa left, has anyone else been affected by the disease?
'There's one girl,' they told us. 'She stays away from the village. We heard she has the disease.'
We went to find her.
Campaigners call leprosy the world's 'least contagious communicable disease'. There's widespread fear in India that the disease is highly infectious, but in reality 95% of humans are naturally immune.
While doctors are still unsure exactly how leprosy is spread – they think it's probably by airborne droplet infection such as coughing and sneezing – they do know that people can only catch it if they happen to have prolonged contact with someone who has the disease. What's more, leprosy is easily treated with highly effective drugs, available for free. In short: the chances of catching it are tiny and, even if you did, there's a proven cure.
But old myths about the disease endure. There's a widespread and totally mistaken fear in India that leprosy is easy to catch and will cause crippling disabilities and deformities. So affected people face terrible rejection, stigma and discrimination.
Even those who have been cured and are no longer contagious are shunned by society and forced to live as outcasts. India has an estimated 1000 leprosy colonies that are home to hundreds of thousands people. No one knows how many people are still driven out of their homes and villages because of the disease today.
We wanted to talk to Bhimamma, the young girl in Narsappa's village who we were told had an advanced case of leprosy. We spoke to her about her experience of the disease. She told us she had been given a course of treatment by her local health centre and told to go to a government hospital for more.
However, Bhimamma said she didn't have the money to go, and everyone in her house was either too ill or too old to accompany her.
We gave Narsappa plenty of time to talk to her, to ensure that she would now receive the right kind of advice, support and treatment.
Bhimamma's situation shows that despite the campaign by the World Health Organisation, Novartis (opens in a new window) and the Indian government to ensure that leprosy treatment is widely available, the full course of drugs is still not getting to some of the poorest people in India – even though this is predominantly a disease that affects the poor.
What's more, ensuring that the drugs get through is only part of the battle. It will take a massive and sustained public education campaign to dispel the widely-held myths and misconceptions about this disease. Despite the best efforts of leprosy charities, changing people's minds remains a struggle of epic proportions.
You can read more from Richard Cookson on the Guardian website
