LEPRA India can trace its genesis to the British Empire Leprosy Relief Association (BELRA, now LEPRA (UK)). BELRA started leprosy work in India as early as 1924, under the royal patronage of the Viceroy of India. It was to address both the medical and social needs of leprosy-affected persons. After independence the Indian Council of BELRA continued leprosy work as Hindu Kusht Nivaran Sangh (HKNS) in India. In 1989 LEPRA returned to India and formed LEPRA Society, and was registered in Andhra Pradesh with its office in Secunderabad.
At the outset, LEPRA India focused specifically on supporting NLEP in Hyderabad. Leprosy control activities were carried out according to the Survey, Education and Treatment (SET) strategy, in which the prime objective was identifying all patients living in an area, using methods such as mass contact and school surveys, and treating them with MDT.
In the eight-year period from 1988 to 1996, LEPRA made remarkable growth in its leprosy activities, starting with the expansion of MDT reach services and introduction of prevention of disabilities (POD) services in projects. This was followed by the establishment of reconstructive surgery (RCS) services, along with the development of a model for community-supported socio-economic rehabilitation (SER). During this period, 175,000 persons affected by leprosy were treated with MDT, 300 persons with deformities underwent RCS and 500 persons with deformities benefited from SER. In addition, LEPRA India gained experience of working with government services and learned to develop successful partnership models with state governments.
LEPRA India is currently working in the states of Andhra Pradesh (AP), Delhi, Orissa, Bihar, Madhya Pradesh (MP), Telangana and Jharkhand. It works in 65 districts in these five states, covering a population of 12 million people. The AP operations began in 1989 with the launching of the first direct project of LEPRA, in Hyderabad, and gradually moved to other districts of the state. The Orissa operations started in 1990, and are providing services in remote, inaccessible tribal areas. Operations in Bihar and MP have started more recently, in 2001 and 2008 respectively.
In India, the role of NGOs in tackling leprosy is particularly important because of a serious reduction in government capacity post-elimination. During the later stages of NLEP, in order to achieve greater synergy of resources and reduce the expenditure incurred in maintaining the vertical NLEP structure, India envisaged integrating it into the different tiers of the General Health System (GHS), with the process to be completed by 2004. It was intended that this would utilize the wider web of GHS for the supposedly sparsely populated leprosy cases. GHS staff, however, had never owned the NLEP programme, and did not share a common understanding with the erstwhile NLEP staff about how to take the leprosy programme forward. Moreover, while integration was appropriate for states such as Jammu & Kashmir and Himachal Pradesh, where cases were indeed sparse, it was quite inappropriate to states such as Bihar and Orissa, where incidence remained high. This again reflected the problem that elimination at the national level did not mean elimination in all states.
The WHO strategy for 2011-15 envisages a chain of referral services at secondary and tertiary centres. In India, the GHS should refer all complications and difficult cases to expert referral centres, one of which is supposed to be present in every district. However, these are not yet fully operational. Specialized care is thus often available only in theory, and in any case many GHS staff do not have the expertise to diagnose leprosy reliably. The role of NGOs in providing clinical expertise and specialist services, and rebuilding government capacity, is therefore particularly important.