Leprosy: Why Treatment Needs To Go Beyond The Cure
In the UK it costs on average £550 pcm more to live if you are disabled and prejudice remains quite common. Indeed many commentators have pointed out that the burden of austerity has disproportionately fallen on the disabled. As a Dad with a disabled son, I can personally confirm that in the “fifth richest country in the world”, prejudice, stigma and discrimination are thriving. These are the facts in a country with a plethora of anti-discriminatory laws and an active justice system to ensure they are upheld.
Upon my recent appointment with Lepra, I wondered when I travelled to India whether the situation would be better or worse for those affected by leprosy. Sadly though, after meeting patients, disabled people, community groups and staff I heard that India resembles the UK. There is more than enough prejudice and discrimination to go around it seems – though things are improving.
There is a great stigma attached to leprosy, leading people to be “cast out” from society, rejected by their families and friends, insulted and shamed. This inevitably leads to many avoiding treatment and fearing a diagnosis, even though there is a free cure. As a result, currently at least four million ex-leprosy patients live with a disability, largely due to a late diagnosis which increases the chances of severe disability. Some people with leprosy can experience paralysis in their hands and feet, causing clawed fingers and toes, desensitisation of their extremities leading to traumatic amputations, ulcers, gangrene and occasionally facial damage and blindness. All of this seemingly often invokes prejudice and fear, rather than empathy and compassion.
Leprosy is in a special category of disease though. It is frequently met with an absolute and unthinking prejudice and then a second discrimination towards the disability that leprosy can cause. To keep up the election jargon, “a double whammy.”
On my travels, I met Hassan whose life had been improved through reconstructive surgery at St Joseph’s Leprosy Centre. Leprosy had caused his hands to claw, leading to difficulty at home and losing his job. Worse, it identified him as someone affected by leprosy who was then rejected by his brothers and prevented his marriage going ahead. Treatment to destroy the disease had been successful, but the disability had left Hassan vulnerable to prejudice. Our surgeons were, however able to make significant improvements to his hands, restoring their appearance and most of their use. Hassan is now much happier; he is less subject to fear, suspicion and prejudice and those around him now have begun to accept that the disease was just bad luck, was barely infectious anyway and his treatment was successful.
Pictured: Patients at St Joseph’s Leprosy Centre
For Lepra our work therefore goes far beyond diagnosis and treatment. Last year we helped 594 other people living with serious leprosy related disabilities by facilitating their access to specialised centres focused on rehabilitation. One such centre is our St Joseph’s Leprosy Centre (SJLC) based in the Khargone district of Madhya Pradesh. This centre provides counselling, self-care services, ulcer and reaction management besides rehabilitative surgery. Interestingly, patients undergoing operations receive incentives compensating for their loss of wages. These enable them to pay for their journey, feed their families and so receive their life-changing treatment.
Fear, and prejudice can be beaten and our work at St. Joseph’s is an example of that. Leaving India, I concluded that just like the UK, our societies have a long way to go to meet basic standards of disability care and to become free from prejudice. It was encouraging though to see that our work focusing beyond leprosy treatment to tackle prejudice and disability was enabling people to live a much better quality of life.
To find out more about how we’re changing lives with reconstructive surgery visit lepra.org.uk.