Behind the scenes: Lifelines in India

Filmmaker’s comment: Brian Tilley

It is two hundred kilometres from Patna to Munger travelling south and east skirting the banks of the Ganges River. We are with Rajni Kant Singh , district head of the NGO Lepra in Bihar, India.

Rajni has a lot to say at a great pace, so you have to tune into his accent quickly or get left well behind. He is a physiotherapist by training – from a farming family somewhere else in India – but it would be a disservice to narrow his definition or area of knowledge to physiotherapy.

He comes across like a cross between a doctor, engineer, inventor and raconteur. His knowledge on any subject is exhaustive – the making of clay bricks, the source of diseases, disability footwear, engines, you name it, he will tell you about it with great passion. But we are here to find out about leprosy; an almost forgotten disease in the modern world.

Half of the world’s leprosy burden

In 2005 the Indian government declared that leprosy had been eliminated. The World Health Organisation allows countries to announce ‘elimination’ when there is less than one leprosy case for every 10,000 people. But for Rajni and other health workers on the ground this so-called elimination has been a problem. Since then, funding that used to go into the control and treatment of leprosy has dried up while the disease continues to spread. India still accounts for more than half of the global leprosy burden, with over 130 000 new cases each year

Munger, when we reach it nearly five slow hours later feels almost Arabic. Narrow crowed streets, an ancient town going back to the seventeenth century. The red Mughal fort still stands on the bank of the Ganges but now houses government offices. To get to the Lepra Referral Centre, we pass though a Muslim neighbourhood. Ancient mango trees crowd between the houses and beautiful kids stare out at us as we bump by. At the Referral Centre, we are met with the traditional greeting, a garland of marigolds, a red dot on the forehead and good wishes, which seemed to work as the day unfolded in a way that is perfect for the film we are making for the Al Jazeera series Lifelines – The Quest for Global Health.  

Going back in time

First we film a new patient, Meera, who Rajni describes as a tribal woman who lives forty kilometres away from Munger. Meera is a woodcutter – she brings wood to market and sells it. She is dressed in a bright red Sari and says she has recently had difficulty holding things, finding she drops objects when she shouldn’t. There is a pale patch on her forearm. The doctors here see from thirteen to twenty new cases each day at the referral centre.

In Mira’s case they are thankful because she has come early. She has not gone to a traditional healer and not waited for the symptoms to get more serious. It feels, in the initial diagnosis, like we have gone back in time. The doctor prods a sharp pencil all over Meera’s arm and she closes her eyes and has to say if she can feel the prick. If she doesn’t fell the prick in the pale patch on her skin it means she has a loss of sensation and this is the telltale early sign of leprosy. The examination is gradual and thorough.

Meera has leprosy but is in the early stages. This means that after a six-month course of multi drug therapy, MDT, she will be cured. Meera is counselled and gets her medicine from Rachna Kumari who is herself a recovered leprosy patient.

Rare patience and empathy

Rachna still carries the physical and mental scars that leprosy often brings. Once diagnosed she was kicked out of her house by her husband’s family. Rachna’s journey to recovery was long. At first she was misdiagnosed at major hospitals and her condition worsened. It was only when she found the local Leprosy clinic run by LEPRA that she started to recover. From that point on she decided she would do what she could to help other leprosy sufferers. She does this every day with rare patience and empathy.

Rachna says, “In India, we have to bring people who have leprosy back into mainstream life in without discrimination. We should have the right to a normal life but that is often not the case because of the stigma that comes with the disease.”

January 26 is Republic Day in India. All over Munger, on every street corner, on the roof of every business, at every school people gather in the morning around makeshift six or eight foot flagpoles. The flag is unfurled, the anthem sung and afterwards you eat sweetmeats and masala snacks. In a country that often seems like it can’t avoid a certain level of chaos and disorganisation, it is moving to see how everyone has paused, simultaneously, to take time to honour the idea of India, the republic.

‘We can do it’

We were on the roof of the Munger Lepra Referral centre for the flag unfurling. Below in the street, as the flag stiffened in the morning breeze, a long line of barefoot men and woman jogged down the road carrying containers of water on the end of thick bamboo held across their shoulders. They have collected the holy waters of the Ganges from the other side of Munger town and will be running and walking for one hundred and fifty kilometres to empty the holy water at a shrine to the lord of the Hindu gods, Shiva. Millions of people do this each and every year.

On the roof Rajni is flushed with the energy of Republic Day. “This day is a very important day for all our Indian people. It makes us proud because we got independence. But we still have a lot to do, to make an efficient health system is a very big challenge in a country with a huge population. But we can do it. We can do what is needed for leprosy.”

For Lifelines we spent 3 weeks in Bihar and Hyderabad filming the work being done on the ground at clinics, referral centres, leprosy colonies and a hospital where reconstructive surgery restores the use hands and feet that have been seriously affected by leprosy. Everywhere, we found health workers determined to make sure the treatment and control of leprosy is tackled reaches a level that makes a difference.

Lifelines: The Quest for Global Health will air on Al Jazeera in 2014. ‘Ancient Enemy’ the seventh film in the series focusing on leprosy in India will premier on 22 May 2014 and be available online.