Every two minutes someone somewhere is diagnosed with leprosy and almost nine out of every one hundred people diagnosed is a child.
Every day more than 50 children are diagnosed with leprosy and even more remain undiagnosed due to a lack of healthcare services.
Worse, some of these children are diagnosed so late that they develop Grade 2 disabilities; visible disabilities such as damage to hands and feet and severe eyesight impairment.
If left untreated, leprosy causes immense physical suffering and disability to children; such as nerve damage and disfigurement of the face and limbs and its characteristic lack of sensation can lead to injury and blindness.
Manjeet, nine, is from Mau tehsil, district Bhind in Madhya Pradesh, India. He came to the The Leprosy Mission hospital with multiple disabilities; clawed hands and foot drop. It is almost unheard of for a nine old child to have such deformities. Manjeet has had two reconstructive surgeries and one hand is undergoing physiotherapy. His right foot has also been operated upon. Once it is stable, he will undergo surgery for his left foot. In time, he will be able to live a normal life.
Leprosy is, however, a curable disease and can be easily treated with a course of multidrug therapy. The drugs are donated by the Novartis Foundation and are available free of charge to all patients worldwide. The treatment is highly effective, it has few side-effects, a low relapse rate and there is no known drug resistance. In the last 50 to 60 years there has been remarkable progress made in the fight against leprosy.
So the question is, if leprosy is a curable disease and can be easily treated, with no charge to patients, why is leprosy still affecting children and causing disabilities?
One reason that leprosy isn't diagnosed early enough is that there are no diagnostic tests available. This means leprosy is more difficult to detect at the early stages before any disabilities become apparent. Instead, a diagnosis needs to be made by a medical professional at a clinic. The early signs of leprosy usually show on the skin as pale patches of skin or anaesthetised patches of skin. A laboratory test can also be used.
In addition, leprosy has a very long incubation period. In some people with leprosy, it may be ten years or more before any clinical signs or symptoms show and during that time, leprosy may be transmitted to family, friends and neighbours.
Many people think that leprosy has been eliminated as a public health issue. This is true in many countries. With the introduction of multidrug therapy the number of new patients with leprosy decreased from more than five million patients in the mid-1980s to fewer than 200,000 in 2015.
But the elimination of leprosy was measured on achieving a rate of less than one leprosy patient per 10,000 of population. This goal was declared achieved at a global level by 2000. Most countries achieved this rate by 2005 but a number of countries did not. Today, there are 13 countries worldwide where 94% of leprosy is reported.
Since the 2000 declaration, there has been a decline in the provision of leprosy services including the detection of new patients. The numbers of newly diagnosed child patients with leprosy and increasing numbers of children with Grade 2 disabilities shows this decline further. It is also feared that there is an accumulation people with leprosy who remain undiagnosed and untreated. This accumulation of people affected by leprosy represents a major threat to leprosy control and increases the burden of transmission.
In conclusion, special action is needed urgently in highly endemic countries and high endemic pockets within these countries. This means scaling up and improving leprosy services including its proactive early detection and treatment. Proactive early detection and treatment has a double benefit: it breaks the chain of transmission and reduces Grade 2 disabilities.
With the commitment of national leprosy programmes, together with support from partner agencies and active involvement of people affected by leprosy, the goal of a world without leprosy could finally be achieved.