Self-help groups can be very useful in this respect. The importance of educating patients and families in recognizing early symptoms of the disease cannot be overemphasized. In addition, quality of care will be essential to enhance the credibility of the program and sustain the collaboration of the patients.
Thus, apart of surveillance for early detection and follow-up, activities will have to concentrate on the prevention and management of deformities and disablement. There is an ongoing debate on the respective importance of cure and care. Would there be care or cure? Care after cure? Or would no more care be needed after cure? While it is true that the best way of preventing disabilities remains early diagnosis plus MDT, the untreated patients of today are the mutilated ones of tomorrow, yet, a large number of individuals survive, and new ones will appear, who are or will be victims of late detection or inappropriate treatment in the past. There is therefore no conflict between cure and care. One or the other may take precedence according to needs, resources and opportunities.
As mentioned by the participants, the social and economic integration of persons affected by leprosy is an important means for promoting human dignity, reducing stigma, increasing economic independence and efficiently using community resources. This must be a priority of leprosy programs along with cure and prevention of disabilities.
I was personally impressed by one concern that came along all the way in the discussions： that people with impairments are not necessarily in need of rehabilitation. This is important. Concerned individuals are the only ones who should judge their degree of autonomy, self-dependence, and aspirations according to their own concepts of what is a satisfying life. Rehabilitation should never become a goal per se, no more than prevalence, institutional program, or even the leprosy image itself should.
It remains that life in all its fullness, that is the integration and empowerment of persons affected by leprosy, goes through the prevention of disabilities, and the prevention of disabilities goes through research. Research on the pathogenesis of nerve lesions and the mechanisms of protective immunity for nerve damage should therefore be very high on the agenda of priorities. It was once said that eliminating leprosy as a public health problem will possibly be achieved before the epidemiology of its transmission is elucidated. I think that is correct. By contrast, large scale prevention of deformities will certainly not be achieved as long as so little is known about their mechanism.
There is a great shortage of knowledge regarding the actual size of the disability problem in leprosy, its trends, its age and sex distribution, and its associated risk factors. A large cohort study is being carried out in Bangladesh, whose results are expected to be determinant for the planning of prevention and the management of deformities. New insights are also opened by a molecular approach to characterizing the interaction between M. leprae and the peripheral nerves, which could throw light on a variety of questions, such as why does the bacillus target the nerve and how does it invade the Schwann cell, how often are the nerves infected at the latent stage or do they shelter bacilli responsible for later relapses.
