Elimination of leprosy as a public health problem as targeted by the World Health Assembly in 1991 is a major initiative against an age-old disease capable of devastating its sufferers for life.

　

While leprosy was considered till 1980 as a perennial problem with no solution in sight, the introduction of multi-drug therapy (MDT) in the last twenty years has resulted in enormous progress towards conquering the disease. The leadership provided by WHO together with the strong commitment of leprosy endemic countries and the support of NGOs and donor agencies have greatly contributed to the reduction of the global burden of leprosy by almost 90% and the elimination of the disease as a public health problem in over 100 countries. Currently, only about a dozen counties have major problems with leprosy with India topping the list.

　

Leprosy has been widely prevalent in India for centuries. India has always been the country with the largest number of leprosy in the world. In the 1980's it had over three million registered cases. Largely due to vigorous efforts under the national leprosy program this burden has been reduced to less than half a million cases today. Even with this phenomenal reduction the leprosy burden in India is still huge and the intensity of the disease in terms of the rate of prevalence is more than four and half times the limit set by WHO for elimination of the disease. In terms of the absolute number of cases, India has six times more cases than the whole of the African continent and six times more cases than all the Asian countries other than India put together. In relation to South Asian Association ofr Regional Cooperation or SAARC countries India's share of leprosy is a phenomenal 95%.

　

Leprosy in India has several special features. Among them the most important is its very uneven distribution. About 20 years ago almost half of the leprosy burden in India was in the southern states. With rapid progress made in the southern states in controlling the disease, today a very high proportion of the leprosy buren is born by the states of Chhattisgarh, Orissa, West Bengal, Bihar Uffar Pradesh and Jharkhand [COWBUJ states]. The reconstituted Madhya Pradesh also contributes to this to some extent. If I can make a rough statement, I can say that today 70% of all leprosy in the world is in India, and 70% of all leprosy cases in India are confined to the 6 states mentioned above. This means that nearly half of all leprosy patients in the world are in the six COWBUJ states.

　

Even within these six states the problem is more serious in certain districts than in others. Of the 193 districts in the six states 49 districts or 25% of the districts in these six states have extremely high prevalence of leprosy of over 10 cases per 10,000 population i.e., that the prevalence in these 49 districts is more than 10 times the limits set by the WHO for leprosy elimination. This does not mean that the other districts are not important. Of the 193 districts apart from the 49 mentioned above another 92 districts or 48% have prevalence levels between 5 and 10 per 10.000 population, and only 51 or 26% have prevalence levels between 2 and 5 per 10,000 population. To put it another way one can say that of the 152 districts in the whole of India which have a prevalence rate of more than 5 per 100,000 population, 142 districts or fully 93% come from the six COWBUJ states.

In the light of this current situation, which will be dealt with in much greater detail by the representatives of the various states later on in this meeting, what is it that we are trying to achieve and what are the prospects and challenges for achieving our goal.

　

Our goal is to achieve elimination of leprosy as public health problem everywhere in the world including India. Elimination of leprosy aims at reducing the disease burden to very low levels so that after reaching such low levels the disease will disappear over a period of time. This very low level has been defined by WHO as a level of prevalence of less than one case per 10,000 population. Elimination is not eradication. Eradication, which has a more precise meaning, aims at zero disease, zero transmission, and zero disease agent in the community. In the case of leprosy, eradication is not possible in view of the limitations of technology; neither is it necessary as leprosy, unlike disease like small pox and poliomyelitis, is not likely to result in outbreaks and wide spread dissemination after reaching very low levels of prevalence.

　

Why do we want to eliminate leprosy? Leprosy is not a disease that kills people. Neither does it occur in as large numbers as malaria, tuberculosis or many other tropical diseases. Still we look at leprosy elimination as an important priority for the following reasons: (i) Leprosy is communicable disease; that means that if nothing is done it will perpetuate itself endlessly. (ii) The disease causes huge suffering as a result of the disability it produces, which is permanent and progressive. (iii) The social stigma against leprosy patients results in their discrimination and social suffering. (iv) The existence of leprosy in any community or region produces a very negative image of development in that community or region, and (v) above all what makes leprosy elimination attractive is the opportunities available to see an end to this age old problem. The opportunities are firstly technological mainly in the form of highly effective treatment through MDT and secondly epidemiological in the sense that leprosy is a disease already on the retreat in many areas. Other opportunities include availability of sizable resources as well as national commitments, coordinated through WHO and international NGOs like ILEP. Let me emphasize that leprosy is a winnable war and if we succeed we will have one less problem in the foreseeable future.

　

Having reviewed the situation in broad terms let me also highlight some broad issues in implementing our strategies and how they affect the prospects for eliminating leprosy particularly in the COWBUJ states.

　

The core strategy for leprosy elimination as you all know is to identify all leprosy cases and cure them with MDT. States in India facing problems in attaining leprosy elimination appear to have difficulties with both case detection and treatment.

　

When we refer to case detection it is important to recognize that in order to achieve leprosy elimination nearly every case of leprosy in the community should be identified. In practice this does not happen in many situations. For too long the responsibility for identifying cases of leprosy was held by health services particularly specialized (vertical) leprosy services. While this approach had certain advantages in certain situations the major disadvantage was relatively poor coverage of population resulting in large number of patients remaining undetected. The role of the individual, the family, and the community in suspecting leprosy and reporting to the health service was not given due importance. This neglect towards creating community awareness was based on the assumption that the health provider knew everything that needs to be done for leprosy and the community was mere passive recipients of services. This has not worked in improving case detection beyond a point. Thus the major focus should now shift to creating community awareness about the disease, its curability, and the availability of MDT services. Very often this problem is addressed through heavy investment in media coverage on the assumption that this would solve all the problems of creating awareness. Again this over-simplified approach has produced only limited success. What we need in this effort is creation of people's movement with full community involvement encompassing all social structures whether formal (i.e.) religious or political, or informal. This calls for leadership at the grassroots level and participation of such institutions as Panchayati Raj. There is a clear movement in this direction in some states but the progress is rather patchy and ill-organized. Unless and until the community accepts its own responsibilities for leprosy and acts upon it, it will not be possible to identify every case of leprosy and make progress towards the goal of leprosy elimination.

　

The second issue is the role of the health services. Over the years the technology for diagnosis and treatment has been simplified to a very great extent, thanks to the initiatives taken by the WHO so that today it is possible to provide the necessary minimal skills and competence to deal with leprosy to practically any health worker. There is no need any more for specialized leprosy workers to deal with the routine work in leprosy. This means that leprosy work including diagnosis and treatment can be easily handled by general health care services and there is no need to build or perpetuate specialized services for leprosy except for some very restricted activities. Still there is a lot of hesitancy and resistance in many states in India to integrate leprosy within the general health services. It is true that the quality of service provided by the general health services may be less than perfect, but no other service can match their outreach, familiarity with the community and acceptability.

　

In relation to treatment with MDT the capacity of the general health services should build up sufficiently and made to function effectively. Further it should be ensured that they receive adequate support including an uninterrupted supply of MDT drugs. Thanks to the generous donations of MDT drugs by Nippon Foundation from 1995 to 2000 and Novartis since then every patient not only in India but also in every leprosy endemic country is able to obtain MDT drugs free of charge. It is this "drug security" that has brought about a revolutionary change in the fight against leprosy.

　

In addition an important focus in recent years is to make MDT available in a flexible and patient-friendly manner and make the patient accept more responsibility for the regular intake of drugs. While in principle this is a good approach it is important to monitor that desired results are being obtained. Again many of these issues should be solved according to local conditions.

　

In the light of the progress made so far in India particularly in the six states harboring a high proportion of the leprosy cases, what exactly are the prospects for attaining leprosy elimination by the year 2004 or 2005 and what are the challenges faced? How can we overcome the challenges? Although the goal set is for elimination at the national level, meaning that the prevalence figure of less than one in 10,000 should be reached as a national average, unless the six states achieved reasonable success in coming close to that figure of one case per 10,000 population the national level attainment of leprosy elimination will not be possible. With 142 out of the 193 districts in the six states having a prevalence of more than 5 times the elimination limit unless enormous efforts is made in the next 2 to 3 years the goal cannot be reached. While we have to do more of what we are already doing we have to think hard in terms of additional strategies and approaches that would accelerate the progress. In this direction there are five areas that need immediate action. These are:

　

　

These five activities should be monitored closely, in addition to monitoring and evaluating the leprosy situation periodically. In this connection state level coordinating bodies for reviewing and monitoring the programme and also capable of taking decisions to accelerate progress are of paramount importance. The approach to monitoring and evaluation of the leprosy situation should also be district specific, and simple indicators should be developed and used at the district level to monitor performance and to ensure accountability.

　

Activities in this area particularly to create and improve awareness has been part of the India National Leprosy programme (NLEP) for many years. These activities were also widely promoted during the modified leprosy elimination campaigns or MLECs. A considerable part of the investment in MLECs had gone to putting out messages through media. Other local approaches have also been tried. While these had been claimed to be very successful as measured by the large numbers of cases detected during MLECs there are other indications that they have not been sufficiently effective . For instance if MLECs which are carried out once in 12 to 18 months had been sufficiently effective in case detection the inter-MLEC periods should show a marked depletion effect in case detection during these periods. In many areas this depletion effect is not seen suggesting that MLECs are only partially effective in case detection. Secondly, we continue to receive new cases with long standing disease and often in relatively advanced state. The indicator that we often use to measure delayed detection of "proportion of patients with visible deformity" is too crude to measure all delayed diagnosis. The important thing is to recognize that leprosy is a disease which is visible on the skin as insensitive patches, and people in leprosy endemic areas often know that these patches could be due to leprosy. Still, a proportion of them do not report to health services in time. Is it because some of them do not know that they have the disease? Is it because they do not know leprosy is curable? Is it because that they do not know that treatment is available free of charge in the nearby health facility? Or it is because that the patients fear that they won't get sufficient attention when they report to the health facility? What happens to all the message we put out? Why is it that their penetration is not adequate? The answer is that the communities are often dealt with as passive recipients, are not involved in the process, and are not encouraged to accept ownership of their problem. A totally health services-oriented approach can only provide limited success . Are we doing enough to encourage institutions such as Panchayati Raj to discuss leprosy as their own problem and seek help and collaboration from the health services? In the area of community action we have some very good examples from Chhattisgarh through the DANLEP initiatives. Why is it that we are not able to replicate them in other areas?

　

It is easy to say that leprosy should be integrated within the general health services in order to improve coverage. However, in practical terms integration of leprosy has not been found to be easy. Firstly, the historical burden of the vertical approach to leprosy with its specialized workers makes it difficult for general health services to accept leprosy work. In addition even where some progress has been made towards integration the vestiges of vertical workers are unwilling to part with their ownership of leprosy work and they create impediments for integration. Apart from these the urgent need to build the capacity of general health services and to motivate them have not been fully recognized. The training programmes organized as part of MLECs have not been sufficiently effective. In addition some of the leprosy patients who used to receive service s from vertical workers complain that the quality of services provided by the general health services is relatively poor. While it is not possible for general health services to provide the kind of focused attention to the patients provided by the specialized services earlier considerable degree of the problem appears to be one of attitude on the part of the patients as well as general health services which are amenable to improvement through proper patient education and capacity building exercises.

　

The general health services not only need capacity building but support to ensure that all aspects of case detection and treatment are carried out satisfactorily, and specific problems are attended to. This can be ensured by periodic visits by leprosy support teams who would act as catalysts and facilitators to ensure that all activities relating to leprosy elimination are being carried out reasonably well. In the six states such support teams already exist. However their performance is quite varied. While the concept of support teams is sound the way they are functioning at present is not entirely satisfactory.

　

First in terms of coverage support teams should be in adequate numbers in relation to number of health facilities to be visited, frequency of visits and the endemicity of leprosy. Secondly, the role and functions of the support teams should be clearly defined in terms of their capacity building activities and monitoring of leprosy elimination. It should be made clear that they are mainly facilitators and not supervisors, neither should they take over any function that is legitimately that of the general health services. As most of the support teams are run by donor NGOs the temptation is to add additional functions in keeping with the interests of one or the other NGO. However, such add-on functions should be kept to the absolute minimum.

　

Currently supply of MDT drugs is well organized by WHO and NLEP. It is important to maintain close monitoring of drug distribution so that there is no interruption of drug supply at any time at any level.

　

Leprosy work is handled by several agencies, mostly within the ambit of NLEP, but some outside of NLEP. Coordination of their activities through appropriate mechanisms is extremely important. This is particularly true in urban areas where multiple actors are involved in handling leprosy. Particular mention should be made of private practitioners who need to be coordinated and co-opted to ensure progress towards leprosy elimination. In order to ensure treatment of patients with standard MDT in the private sector the private practitioners should be given supply of MDT drugs free of cost for distribution to the patients. Their capacity building should also receive high priority.

　

In relation to coordination all partners should ensure that they work within the NLEP and follow the national strategies and guidelines. There is no more any need to think in terms of geographic ownership of areas for total responsibility for all aspects of leprosy work in such acres. Rather the partners should focus on specific functions in support of NLEP and promote cohesion. This also means mutual respect, better understanding of each other's role, and frequent consultations through coordination meetings. The goal is clear. The challenges are many. But the opportunities are there to exploit. Can we do it?