Post-elimination surveillance– the case of leprosy in India

Leprosy sufferer in India 

Leprosy, once a major global public health problem, is now considered by the WHO as “eliminated” (less than 1 case per 10,000 population) from all but one country. However, with the recent increase in annual cases in countries like India that achieved leprosy elimination, the Global Alliance to Eliminate Leprosy recommended that the WHO should pass a resolution making it clear to the world that leprosy has not been eliminated.

India’s elimination story

India 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 prejudice

India 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 Forward

The 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.

Recommendations:

• 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