Because the disease carries a stigma going back centuries, many sufferers are afraid to come forward
LONDON, Jan 14 (Thomson Reuters Foundation) - Millions of people live with the effects of leprosy and tens of thousands of new cases are reported every year, but the debilitating disease can be eliminated given enough resources, an organisation helping to curb the disease said.
It is one of the oldest known diseases, first mentioned in written records in 600 BC, and affects the poorest and most marginalised communities. If untreated, it can lead to permanent disability.
Although the number of cases has plummeted from 5.2 million in 1985 to about 210,000 a year now, it still exists in more than 100 countries. The majority of cases are found in India, Brazil and Indonesia.
"The last mile is the most difficult one and the most expensive one, and one where you need most innovation and resources," said Ann Aerts, head of the Novartis Foundation.
The foundation has run leprosy programmes for decades and is working with the World Health Organization (WHO) to reduce the spread of the disease.
"We cannot give up ... now that we are almost there," Aerts said in a telephone interview from Basel, Switzerland.
The WHO has made free treatment available globally since 1995, initially through the Nippon Foundation, and since 2000 through the pharmaceutical company Novartis and the Novartis Foundation.
In 2000, when the number of cases fell to less than one in 10,000 people, the WHO declared leprosy was no longer a public health problem, and the political and financial commitment to curbing the disease then dropped, Aerts said.
"With that we saw a drastic drop in case detection rate as well, which was definitely not linked to a decline in transmission but most probably a decline in reporting or diagnosing of leprosy," she added.
DIAGNOSIS CAN TAKE 20 YEARS
Leprosy, a bacterial infection, is curable using a combination of three drugs. But it can only be diagnosed once visible symptoms appear, and this can take up to 20 years.
It is spread through droplets from the nose and mouth, after frequent contact with a sufferer.
One way of stopping the disease from spreading is to trace all contacts of patients and give them preventative treatment.
Because the disease carries a stigma going back centuries, many sufferers are afraid to come forward for help, or are reluctant to let friends and neighbours be contacted for preventative treatment.
People who develop disabilities from leprosy are often excluded from their families and their work, and women may find it harder to marry if they are known to have the disease, Aerts said.
Women are much less likely to be diagnosed than men - they comprised just 36 percent of new cases in 2014, WHO figures show.
Nearly 10 percent of new cases are children, according to the WHO, which is developing a strategy to improve early detection by 2020 and stop all children from developing deformities.
"Children with leprosy don't get a chance," Aerts said.
"They start their lives excluded because they have no more fingers or they cannot close their eyes any more, and you see how they suffer because they were not diagnosed in time."
Adult patients may have been infected years before they were diagnosed, but children catching the disease is a sign the infection is being spread now.
"It's very worrying that this is still the case," Aerts said.
"That's what is driving us to diagnose people earlier, to make sure we see fewer and fewer children with the disease, which would mean ... the disease is being transmitted less and less."
(Reporting by Alex Whiting, editing by Tim Pearce. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers humanitarian news, women's rights, trafficking, corruption and climate change. Visit news.trust.org)
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