Following the overview by Dr. Noordeen there were detailed and lively discussions on various issues covering the following areas (i) Political commitment (ii) Integration (iii) Co-Ordination and (iv) Prevention of deformity and rehabilitation.

　

The discussion on political commitment brought out several issues. It is clear that there is an important need to promote political commitment at all levels. While the commitment at higher levels is reasonably good, at lower levels it is insufficient. This could be corrected through sustained IEC activities. Commitment of NGOs towards leprosy elimination also needs to be further reinforced.

　

Regarding political commitment at lower levels the future was for leprosy elimination to be considered within the context of comprehensive and strengthened health systems and for the involvement of Panchayat Raj system. Progress in this direction is being made in Madhya Pradesh, Chhattisgarh and West Bengal. In Madhya Pradesh the Chief Minister in addressing village health committees periodically leading to empowerment of the community. Political commitment could also be promoted through involvement of national NGOs in addition to International NGOs and the challenge is how to get the gross-roots NGOs to participate in leprosy work. The best message to disseminate is that today leprosy is curable through MDT. In this connection the Atlas on Leprosy produced by SMHF was considered to be a useful tool and it was agreed that it should be produced in multiple Indian languages. So far, over 80,000 copies of the English version have been distributed in India.

　

The NGOs in India fully recognize that there is only one national programme and they are fully behind the goal of leprosy elimination, and are facilitating it by supporting integration and district support teams (currently 104). However, NGOs like TLM will continue to meet in addition various other needs of leprosy affected persons for many years to come, which will include fighting against social discrimination and social injustice associated with the disease.

　

The discussion on integration brought out several issues hindering full integration. The vertical elements continue to exist in many states and the participation of general health services (GHS) is only partial. Such split ownership make integration very difficult. Currently the major problem faced by the states is how to dismantle the vertical structures and redeploy the vertical workers without affecting their carrier prospects. While funds are available for training general health workers in leprosy it is not so far retraining of vertical leprosy workers for general health work. While states like Tamilnadu had opted for integration at one go, others are considering a step by step approach. While sudden integration leads to many administrative problems, it at least prevents building up over a period of time resistance to integration. Integration in Bihar and Jharkand is progressing well mainly because of the absence of strong vertical structures. West Bengal also is making progress by training of GHS staff using vertical staff.

　

The experience so far is that general health workers accept leprosy work and perform quite well. It is often the vertical workers wanting to perpetuate themselves who are against GHS workers taking over the responsibility. It is important that wherever vertical personnel continue to exist for one reason or the other their role is clearly defined, so that they focus on their support function. Similarly, it is important to develop referral facilities for leprosy within the general health referral structures such as secondary and tertiary level hospitals. A question was raised on the capacity of GHS staff to win the confidence of leprosy patients and it was agreed that this problem should be addressed through proper training of GHS staff.

　

A major issue in integration is how to solve the relevant administrative problems and make sure that integration takes place without much delay. The role of the Central Government in this was considered extremely important. Government of India (GOI) is already ensuring this by linking financial support to states to progress in integration. With regard to retraining of over 20,000 leprosy workers in general health work, progress was being made through development of training modules and mobilization of resources.

　

Discussion on coordination brought out the important need to improve the situation further and the central role of the government in ensuring coordination. In India the role of the state government was recognized as very important. The other partners were mainly playing a supportive role. In this connection the Tokyo meeting itself was very important for promoting coordination of the central and state governments with NGOs and others. It was considered important to have similar meetings at the state level perhaps on a semi-annual basis possibly around events like Modified Leprosy Elimination Campaigns (MLECs). Ultimately the ownership of the NLEP was with the government and it was the government, which was in the 'driver's seat'.

　

ILEP agencies themselves are able to coordinate quite well their activities among themselves, and are also able to cooperate with the government, WHO and other agencies.

　

The discussions on coordination also went into the possibilities of coordination of resources at the national and state levels. Coordination of resources in integrated programmes was considered problematic. The possibility was also raised of coordinating resources at the state level through coordinated budgets similar to what ILEP does among its members. This could greatly facilitate coordination of activities and ensure a transparent budget reflecting all inputs into the state programmes.

　

At present the State Leprosy Societies and District Leprosy Societies were ensuring a degree of coordination through inclusion of NGOs in their membership. While coordination at lower levels was relatively easy it needed strengthening at higher levels. Coordination ideally encompasses sharing of information on planning, programming and evaluation among all partners. In addition it is important to ensure coordination of activities in border areas among neighboring states and countries. WHO has introduced a non-restrictive coordination mechanism at the global level through GAEL and has offered membership to those who are endorsing principles of leprosy elimination and working within the framework of government plans.

　

Discussions on rehabilitation made on two separate issues of prevention of deformity (POD) and socio-economic rehabilitation (SER). While POD was recognized as part of leprosy treatment SER was not considered a primary health issue. SER was the responsibility of the social welfare sector at both national and state levels. Grants in aid schemes were available for SER at the GOI and state levels.

　

Rehabilitation is closely linked to the image of the disease, and therefore it is too important to be left completely to the welfare sector. If the image of leprosy has to be improved and the social stigma removed then it is important that the cured persons are restored to normal life. Thus, there is an important need for the Health Ministry to organize a meeting with the Social Justice Ministry and discuss coordination issues on rehabilitation of leprosy-affected persons. In this connection the role of IDEA, an NGO of persons affected by leprosy, should be recognized as important developments to address the issues of social integration and social participation of the leprosy affected persons. Even if the message of leprosy as a curable disease is disseminated the same effort should be made to understand the position of those who had leprosy. The past harsh images of the disease should be replaced by soft images including for fund raising purposes.