The 'elimination' of a disease is usually considered a good thing. When fewer than one person in 10,000 has leprosy, the disease is declared eliminated, or no longer a public health problem.
According to its Leprosy Control Program, Nepal has sustained the elimination of leprosy as a public health problem at the national level since 2010. This major success story conceals a frightening truth. In some of Nepal's seven Provinces, leprosy has not been eliminated at all. For example, more than one in 10,000 people were registered with leprosy in Gandaki Province, Pokhara, where SFLG's partner, Green Pastures Hospital is located.
When the elimination of leprosy was declared in 2010, government health services were scaled back with terrible results for people with the disease. The provision of healthcare for leprosy or leprosy-related disabilities such as ulcers was reduced and the knowledge and ability to diagnose leprosy declined.
"When elimination was declared in 2010, our NGO partners and donors withdrew their interest and their funding," said Dr Ramesh Sharma, Dermatology Consultant, at Green Pastures Hospital. "Today our hospital is packed full of people needing treatment for leprosy."
According to Dr Sharma, even experienced healthcare professionals struggle to diagnose leprosy in its early stages, when the disease can be readily confused with scabies, psoriasis, or other skin disorders.
"Even dermatologists can misdiagnose leprosy and the younger doctors have never been exposed to leprosy, said Dr. Sharman. "Who is going to suspect a disease that has been declared eliminated?"
If leprosy is allowed to develop unchecked and untreated, it can be spread, unknowingly into communities and cause life-changing disabilities. It is estimated that four million people are undetected or affected by leprosy worldwide.
"My greatest fear is that people with leprosy who are undiagnosed and untreated will pass on the disease to others in their community or go on to develop terrible disabilities" said SFLG's Chief Executive Officer, Clare McIntosh.
"Historically, when the term 'leprosy elimination' has been used at a national, regional or global level, it hides the fact that leprosy still exists, undiagnosed, at a local level, in hidden, endemic pockets" she explained.
"I urge any government to think long and hard before declaring that any disease no longer exists at a general or statistical level, whether it's COVID-19 or leprosy, said Clare. "Our experience with leprosy shows that it can hide, undiagnosed without symptoms for years before slowly re-emerging with disastrous consequences."
She concluded: "we must think very carefully by what we mean in 'elimination' in relation to leprosy."
SFLG's TRACE operating strategy is putting an emphasis on Active case-finding (ACF); early detection of leprosy followed by treatment with Multidrug therapy, reflecting new global approaches in the ongoing fight against leprosy.
Although leprosy was declared eliminated in Nepal in 2010, several thousand new cases of leprosy are diagnosed there every year. Since the country now lacks trained health workers to recognise the early signs of leprosy, many cases go undiagnosed and untreated. The delay in diagnosis, as well as continued social stigma, means many people do not receive the treatment or the support that they need. SFLG has worked with the International Nepal Fellowship at Green Pastures since 1997.
Green Pastures Hospital, run by the NGO, International Nepal Fellowship (INF) is helping to support this need. It opened in 1957, in Pokhara, Gandaki Pradesh, and now serves around 11,000 patients a year. INF Works closely with the Nepal Government, local communities, and local, national, and internal agencies. Download Green Pastures fact sheet.
About Nepal and leprosy
Nepal, bordered by China and India, is home to the highest mountain in the world, Mount Everest. It has a population of around 29.5 million people, and it is one of the world's poorest nations. Development challenges include its landlocked position, unemployment, lack of access to safe sources of water and poor infrastructure. In addition, the devastating earthquakes in 2015 and political infighting have significantly delayed the development of the country. Nepal is a WHO Global Priority country for leprosy.