Millions of people living with undiagnosed leprosy at risk of developing severe disabilities

Many millions of people living in poverty are at risk of developing irreversible disabilities, completely unnecessarily, as their leprosy goes untreated.

The leprosy-affected hands of Amina, a woman from Nigeria who has been helped by The Leprosy Mission.

With the World Health Organisation (WHO) reporting 215,557 new cases of leprosy in 2013, it is alarming that ILEP, the umbrella organisation for anti-leprosy groups including The Leprosy Mission, estimate that many millions of people are not being diagnosed and treated.

There has been a cure for leprosy in the form of multidrug therapy (MDT) since the early 1980s.  If a person is treated promptly, as soon as they start to display symptoms, it is likely that they will suffer no lasting effects.  But a combination of stigma surrounding leprosy and ignorance of the disease means a person often delays seeking treatment.  Tragically, if their leprosy is left untreated, they are likely to develop irreversible disabilities including blindness.

Head of Programmes Coordination at The Leprosy Mission England and Wales, Sian Arulanantham said: “India is the country where there are the most new cases of leprosy each year but it is alarming that 85% of the population of Delhi think that it is incurable, a situation we are working hard to turnaround.

“We are passionate about breaking down the stigma surrounding the disease and for people to realise that leprosy is simply a mildly-infectious and curable disease and certainly not a curse for something they’ve done in a previous life.”

Mrs Arulanantham welcomes the WHO’s proposal that, from 2015, success at beating leprosy will be measured by whether a person has ‘grade 2’ disabilities at diagnosis.  This means they have a visible disability or a severe visual impairment as a result of the disease.

Currently, WHO guidelines dictate that governments need only treat leprosy as a public health problem if there is a prevalence of more than one new case per every 10,000 of the population at any one time.

“This gives governments no incentive to train health workers to go out and diagnose and treat leprosy as if they are not finding the new cases, they do not need to do anything,” said Mrs Arulanantham.

“But if they had to prevent grade 2 disabilities resulting from leprosy then they would have to work hard to promptly diagnose and treat patients.

“This would then mean charities like The Leprosy Mission could devote more time and resources to helping some of the world’s three million people, who have irreversible disabilities as a result of the late treatment of leprosy, get out of poverty and have a brighter future.”

Marie Staunton, CEO of ILEP, said:  “The numbers for new leprosy cases dropped significantly – by 60% - between 2000 and 2006.  We would love this to simply be a sharp drop in transmission but evidence would suggest otherwise.  We believe that part of the drop is a result of underreporting to the tune of several million new leprosy cases that remain undetected.”

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