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'Poorest and most marginalised should help shape world's development goals'

The Leprosy Mission is advocating for the voices of five thousand of the world’s poorest and most marginalised people to be heard and help shape the Post-2015 development goals ...

The Leprosy Mission is advocating for the voices of five thousand of the world’s poorest and most marginalised people to be heard and help shape the Post-2015 development goals.

More than 800 people from around the globe who work with or represent people affected by leprosy will join together in Brussels this week (16-19 September) for the 18th International Leprosy Congress.  They include medical researchers, government representatives and NGOs as well as those affected by the disease on a personal level.

People affected by leprosy face a triple blow of disease, disability and discrimination and for tens of thousands, the Millennium Development Goals (MDGs), launched at the UN General Assembly in 2001, have had little impact on their lives.

Head of Programmes Coordination at The Leprosy Mission England and Wales, Sian Arulanantham, will act as a voice for the voiceless at the 18th International Leprosy Congress by highlighting what leprosy-affected people think should replace the current MDGs which expire in 2015.

While the MDGs have undoubtedly had a great influence on international development, such as halving the number of people living on less than US$1.25 a day, they make no mention of disability.  According to UN statistics, around 10 per cent of the world’s population is disabled – equating to 650 million people.  Together, they are the world’s largest minority.

Neither leprosy nor Neglected Tropical Diseases (NTD) feature in the MDGs and there is no drive to address the inequalities and discrimination leprosy-affected people face. Coming from a leprosy-affected family often sees individuals denied access to employment, shunned by fellow villagers and pushed to the fringes of society.

Mrs Arulanantham said: “The world’s most marginalised have not been addressed in the current development framework and we have a responsibility to ensure they are not left out.

“But we can’t speak on behalf of leprosy-affected people and say what we think they would say.  So instead we sought the opinions of 5,000 people affected by leprosy across nine countries in Asia and Africa.

“While they said they had noticed better access to education and an improved infrastructure since the Millennium, they were not benefiting.

“As a result, overwhelmingly, they wanted the inequality in society and discrimination against people affected by leprosy addressed.

“They want to be included in education and training programmes so that they are not reliant on begging.  They also want the stigma in their communities broken down. Access to healthcare and education would see huge strides in this being achieved.

“I was at a Leprosy Mission hospital in Kolkata in India just a few weeks ago and met a man who was being treated for leprosy-caused ulcers on his feet.

“He was diagnosed with leprosy 10 years ago and has not told his family as he is so scared of the consequences. He went away to seek treatment and had to give his business of running a small stationery shop to his son.

“He told me he wants to return to his community as a businessman and not an untouchable.”

“If there was easy access to good quality healthcare for leprosy-affected people he would not be in this predicament in the first place.

“I hope by sharing the research we have conducted, globally we can lobby governments to ensure the views of leprosy-affected people are represented in the Post-2015 development framework.”

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