August 19, 2016

Action, accountability and inclusion: way forward towards zero disabilities among children with leprosy

Dr Poonam Khetrapal Singh, Regional Director,
WHO South-East Asia Region

Leprosy is one of the ancient diseases known to humanity particularly as an incurable disease and for the deformities and social consequences it causes. Religious scriptures and historical accounts also reveal that people affected by leprosy were often viewed by society in a poor light. Introduction of multidrug therapy by WHO in the early 1980s made the disease “curable” and caused a significant impact on reduction of the global burden. The forty-fourth World Health Assembly in 1991 called for the “elimination of leprosy as a public health problem” with a target of bringing down the registered prevalence to less than one case per 10 000 population. Most countries achieved this by 2005.
New cases, however, continue to occur. The global leprosy data for 2014 states that 213 899 new leprosy cases were reported from 121 countries that year. Of these, only few countries from Asia, Africa and South America were considered highly endemic. The WHO South-East Asia Region accounted for 72% of the global caseload. Not less than 7% of new cases presented with visible deformities. Every tenth patient was a child and even some of them were afflicted with permanent visible deformities. The epidemiological picture clearly suggests continued transmission of infection in the community and delayed detection of the disease. Trends over the past 10 years indicate that the number of new cases and those with visible deformities have remained fairly constant. This stagnation in leprosy control causes concern among experts in leprosy, partner agencies and governments of leprosy-endemic countries.
Though leprosy control globally has registered impressive achievements in reducing the
disease burden, breaking the chain of transmission remains the principal challenge towards eliminating the disease and fulfilling the vision of “a world free of leprosy”. The last mile in eliminating leprosy can be completed with inclusive approaches, as well as adequate health and social coverage that include patients and communities affected by leprosy.
The fear of acquiring leprosy and ending up with permanent deformities leads up to the stigma, and is also its main cause. Instances of discrimination against those affected keep surfacing from time to time at home, in schools, at the workplace, and even in health-care settings. This further perpetuates the stigma. Leprosy is still a legal ground for divorce in some countries; and in others persons affected are sometimes deprived of welfare measures. Stereotypes prevailing in the community about leprosy and the fear of getting identified with the disease continue to act as barriers to seeking treatment. WHO continues its efforts towards placing leprosy high on its agenda for reaching the goal of a world free of it. The Bangkok Declaration of 2013 was one such milestone wherein governments and non-state actors joined hands reaffirming their commitment and pledging more resources to eliminate the disease as a health problem in its entirety.
A child diagnosed with leprosy indicates recent infection while the occurrence of the disability is evidence of delay in access to services. It is totally unacceptable to have a child getting permanent progressive disfigurement due to leprosy in today’s world. In consultation with national leprosy programmes and other stakeholders, WHO developed the Global Leprosy Strategy 2016‒2020: Accelerating towards a leprosy-free world, which will guide leprosy control work over the next five years. The strategy is based on the principles of initiating action to stop transmission of leprosy infection, ensuring accountability in implementation, and promoting inclusion of communities and particularly those affected. It aims at zero deformities among child leprosy patients.
The action is aimed at stopping leprosy transmission and its complications through quality leprosy services. Promoting inclusion of communities focuses on breaking the vicious cause-and-effect equation between deformities due to leprosy and delayed treatment-seeking behaviour. Ensuring government stewardship is the best guarantee for rolling out equitable services across countries in a sustainable fashion. The Global Leprosy Strategy is structured to maximize synergies of these three approaches. The patronage of national governments, relevant civil society actors and communities, and adequate resources will take us closer to a leprosy-free world.
World Leprosy Day 2016 reminds us that it is high time for governments, partner organizations and networks of persons affected to join hands to eliminate leprosy and its consequences and deformities, and the discrimination that comes with it. It is important to recognize that every person has a role and every institution a responsibility towards preventing deformities among children due to leprosy and march towards a world free of leprosy.


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