Widespread belief that disease was all but beaten may have bred complacency, specialists warn, amid fears that number of cases is 50% higher than reported

Millions of new leprosy cases are going undiagnosed and untreated, 15 years after one of the world’s most feared and infamous diseases was declared to be virtually eliminated.

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Experts believe the reported number of new leprosy cases each year – as published by the World Health Organization – has been falling well short of the true total, meaning that millions of people have not been receiving the essential treatment that would prevent disability.

The WHO reports that there have been between 200,000 and 300,000 new cases detected globally every year since 2005. However, the true number of new cases is likely to be double these figures.

“At the moment we would estimate that only half of the cases that are occurring are being detected and treated,” said William Cairns Smith, emeritus professor of public health at the University of Aberdeen, the author of a journal article that contains projections of the actual rate of new leprosy cases since 2000. “In the last five to 10 years, there’s been a tendency to miss cases.”

Oversights of this nature have dire consequences for sufferers. Leprosy, a contagious bacterial infection, can be easily cured with cheap, multi-drug therapy if it is caught early on.

Left untreated, however, the disease can can cause serious limb deformities, blindness and nerve damage that prevents sufferers from sensing pain or heat.



Since 2005, the number of people identified cases with visible deformities has increased by 13%, according to the WHO. This would suggest that leprosy not only continues to spread, but is also often left untreated.

A spokesperson for the WHO said their statistics, collated from national health data, would not reflect the total number of cases for all diseases, adding that this is “particularly true for leprosy since the high burden countries don’t have very strong health systems”. The spokesperson also pointed out that leprosy is not an outbreak-prone or vaccine-preventable disease, which are often monitored more rigorously.

As we’ve stopped looking for cases, unsurprisingly we haven’t found them Gareth Shrubsole, the Leprosy Mission

According to Guillermo Robert, a monitoring, evaluation and learning officer at Lepra, there are many reasons leprosy cases go undetected. “One reason is stigma, so there’s a tendency to hide the disease, there’s a lack of access to health facilities, there’s a lack of knowledge – they don’t know the symptoms, so they don’t go to get treatment,” said Robert.

Another major problem, added Robert, is that governments have reduced funding for leprosy treatment because of confusion caused by the language surrounding the disease.

In 1991, the World Health Assembly declared its aim to “eliminate leprosy as a public health problem” by 2000. The goal of the elimination programme was to get the rate of people being treated for leprosy to fewer than one in 10,000 of the population. This aim was achieved, but Smith said it was a “confusing way of defining” elimination.

“It created a false sense of success,” agreed Gareth Shrubsole, programmes and advocacy officer at the Leprosy Mission. “When national figures got below the one in 10,000 rate, people thought ‘Leprosy is a thing of the past, we don’t have to worry about it any more’. So in a country with limited health budget, they’d put money into emerging problems, including HIV.

“It’s understandable but regrettable, because as we’ve stopped looking for cases, unsurprisingly we haven’t found them.”

Facebook Twitter Pinterest Alim from Uttar Pradesh state in India, was tested for leprosy after his father was diagnosed with it. He is receiving treatment from Lepra in Delhi. Photograph: Idris

Whenever active case detection campaigns are run by charities or governments, said Shrubsole and Robert, many more cases are found than have been previously reported in government statistics.

“There is good anecdotal evidence from the field that roughly 50% of cases are being detected,” said Shrubsole. He cited the example of south-west Bangladesh, where the government reported there were fewer than 100 new cases a year. A case detection operation conducted in the same region in 2016 by Leprosy Mission found 422 previously undetected cases.

Similarly, a household survey undertaken in the Firozabad district of India’s Uttar Pradesh state between 2006 and 2009 found 774 previously undetected cases.

Shrubsole said these missing millions were particularly heartbreaking given the fact that there is effective treatment for leprosy, which should mean people newly diagnosed with the infection should not have to suffer the physical effects and stigma that have been associated with the disease for centuries.

“I met a 10-year-old girl in Nigeria with a completely clawed hand, she must have had leprosy for some time for it to get that severe,” he said. “It’s completely avoidable. We see images of old men with gnarled fingers and that’s deeply sad, but nothing could have prevented that because we didn’t have the multi-drug therapy then. But these children can be caught, they can be treated and have a bright future – but not if no one’s catching them.”