|Leprosy sufferer in India|
India’s elimination storyIndia achieved leprosy elimination in 2005. However, the country still accounts for more than half of the world’s disease burden (58%). India’s Leprosy Eradication Programme has been reporting an average increase of 5-7% in the Annual New Case Detection Rate over the last five years, of which the proportion of child cases is on the rise.
Did India underestimate its leprosy burden?The post-elimination era of leprosy in India is marred by lack of political will, shortage of resources manifested in lack of sufficient drugs and trained health workers in addition to the lack of an efficient surveillance system for relapse, drug resistance and treatment dropouts.
Did India rush the attainment of “elimination” by deliberately underestimating its leprosy burden? In 2010-11, the Indian parliament commissioned a National Sample Survey on leprosy in which Lepra and other anti-leprosy organisations were involved. The results of this survey have not been made public because it is suspected to have reported far more leprosy in the country than was expected.
Stigma and prejudiceIndia still enforces 16 laws that continue to discriminate against people with leprosy. For instance, almost all of the marriage and divorce laws in India consider leprosy as grounds for divorce, and other laws prohibiting the leprosy-affected from running for public office or inhabiting ‘normal’ residential complexes (a major reason for the existence of leprosy colonies).
The Way ForwardThe persistent advocacy efforts of anti-leprosy organisations has forced the WHO and the Health Ministry of India to realise that a sweeping national elimination target will not work for a country as huge as India. The National Leprosy Eradication Programme will therefore focus on 209 highly endemic districts by posting well-trained District Leprosy Officers, ensure timely drug supply, introduce active case-finding and actively engage with local NGOs to dispel leprosy-related stigma.
- Keep the momentum on elimination until the incidence reduces to zero and beyond
- Do not compromise long-term strategies for short-term gains
- Do not allow elimination programmes to be mere political aspirations
- Create an enabling environment for infected and affected people to advocate for themselves