Leprosy Elimination Monitoring (LEM) in India: A Novel Exercise of Monitoring, Learning, and Capacity Building

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What could be anything ‘Rosy’ about Leprosy? For manycenturies, humanity suffered from this dreaded diseaseleading to stigma, discrimination, suffering, disability,poverty, and eventually alienated individuals fromsociety to die a slow death. However, on the parallelfront many developments took place especially duringthe last century that created a favorable and sustainableenvironment in lowering the burden of leprosy andafflicted consequences across the world. With thesuccessful introduction of multidrug treatment (MDT) in

1980s, World Health Organization (WHO) in 1991 gavea global call for eliminating leprosy as a major publichealth problem by the year 2000. People were skepticalas the progress was slow but well awaited. This wasbacked up by sound epidemiological knowledge andpractices, apparent lack of extra-human disease reservoir,availability of free MDT, no evidence of drug resistance,simplied information system (SIS) through integratedhealth service approach, interagency coordination, anda high afrmation.

On earth, number of newly detected leprosy cases at thebeginning of 2013 stood at 232,857 (4.00/10,000) witha prevalence of 0.33/10,000 population. The leprosyburden continues to be highest in south-east Asiaregion accounting for 71.47% of newly detected casesand 66.2% prevalence. Pockets of high endemicity stillremain in Angola, Brazil, Central African Republic,India, Madagascar, Nepal, United Republic of Tanzania,Democratic Republic of Congo, and Mozambique.Figure 1 depicts new case detection rate per lacpopulation, world, 2013. In India, reported new casesdecreased from 169,709 (2005) to 134,752 (2012) with aprevalence rate (PR) crumbling down from 2.4 (2004)to 0.73/10,000 (2012).(1,2)

Leprosy elimination means reduction of case transmissionto a predetermined low level, i.e. PR of less than1 case/10,000 population. However, new cases wouldcontinue to occur in small numbers as a result of diseasemaking appearance in individuals who acquired theirinfection several years earlier due to the long incubationperiod of the disease. But due to increased coverageof MDT to previously uncovered areas together withimproved community awareness, the number of newcases is expected to fall steadily. Our country ofcially

declared itself free from leprosy as major public healthproblem in December 2005 (0.8/10,000) but barring some(18.64%) of 642 districts in the country where PR is stillabove one case/10,000 population, it continues to be soat national level. In 2013, the PR continues to between2-4 in Chhattisgarh and Dadra & Nagar Haveli while thestates of Bihar, Maharashtra and West Bengal which hadachieved elimination earlier have shown slight increasein PR of more than one case/10,000population. Thereare approximately 800 leprosy-designated self settled

colonies in the country inhabited by old-treated casesand their ‘normal’ families.

National program authorities were convincedand engaged during their final phase of countryelimination leading to well-structured sample-basedintense monitoring, situational analysis, correctiveinterventions, learning, and capacity building ofvarious stakeholders. In India, this exercise wascarried out in administrative, technical, and nancialcollaboration with government of India, WHO(headquarter, regional, country-ofce), InternationalFederation of Anti Leprosy Associations (ILEP), andNational Institute of Health and Family Welfare(NIHFW), New Delhi through participation ofacademic/leprosy institutions, medical colleges(departments of Community Medicine/Preventiveand Social Medicine and Dermatology), leprosynongovernmental organizations (NGOs), includingstate and district authorities, annually, during 2002to 2004. With the evolution of time, newer generationof medical ofcers/chief medical ofcers were beinginducted in government machinery who may not havenecessarily been administratively exposed to leprosycontrol activities. To ll this unmet need, another

project activity during this period included capacitybuilding of medical ofcers and chief medical ofcersin endemic states to strengthen their supervisory andmanagement skills in leprosy control. Authors wereinvolved with LEM (India) exercise at central level andintend to share their view and experience with publichealth fraternity.

The specic objectives of LEM was to assess:1. NLEP activities on specied elimination indicators

in various states of the country,

Leprosy Elimination Monitoring (LEM) in India:A Novel Exercise of Monitoring, Learning, and

Capacity Building

Editorial

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Sachdeva and Sood: Leprosy elimination monitoring

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2. Progress of integration of leprosy control activitieswith the general health care system,

3. Quality of MDT services provided at eld level,4. Implementation of SIS,5. Community awareness about leprosy, and6. The validity of diagnosis among newly detected

leprosy cases.

LEM survey was undertaken in 13 high priority states

(Andhra Pradesh, Bihar, Chhattisgarh, Delhi, Jharkhand,Karnataka, Madhya Pradesh, Maharashtra, Orissa, TamilNadu, Uttar Pradesh, Uttaranchal, and West Bengal). Ineach state, districts were divided into two strata accordingto the existing PR of leprosy (≥ and


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Delhi and West Bengal, highlighting recycling of casesin these two states. The overall proportion of disabilityGrade-2 among new cases covered by LEM was 1.4%. Itwas lower than 2% in all states except Delhi (3.7%) andWest Bengal (3.5%). Overall, proportion of MB amongnew cases was 38.3%, ranging from 19.2% in AndhraPradesh to 56.8% in Madhya Pradesh. Females among

new cases were 35% (17.5% in Delhi to 45% in AndhraPradesh). The diagnosis of leprosy was being made andtreatment initiated at 80% of the visited health facilities.In 47.1% of health facilities SIS guidelines were available,94.6% had SIS patient cards, 94.9% had SIS treatmentregisters, 84.2% SIS MDT drug registers and in 98%facilities SIS MDT monthly report formats were available.However, compilation of health facility/block reports atthe district headquarters was incomplete at majority ofstates due to delay in sending block reports on time todistricts. The status of MDT stock, in patient-months, invarious health facilities was 2.8 for MBA, 4.6 for MBC,3.4 for PBA and 4.0 for PBC. On further analysis, only

16.7% of health facilities had 3 months MDT stock of allcategories of blister packs, in relation to the number ofregistered cases. High proportion of damaged/expireddrugs was found in Chhattisgarh, Maharashtra, TamilNadu, Uttaranchal and West Bengal.

The median distance to collect MDT was 2.0 km andmedian travel cost was Rs. 10/-. Accompanied MDTwas provided as an option for patients who neededmore than one month of treatment in 59.9% of healthfacilities. The overall cure rate after assessment of cohortanalysis of the leprosy cases was 83.9% for MB and93.4% for PB cases. The defaulter rate was 6.5% for MBand 3.7% for PB cases. The MB defaulter rate was highin West Bengal (29.9%), Delhi (27.8%) and Uttaranchal(10.9%). For purpose of monitoring, only 33.8% of healthfacilities were found calculating at least three NLEPindicators. Out of the 1081 newly detected leprosy casesexamined by validators, the proportion of cases whichwere wrongly diagnosed was 9.4% (11.1% for PB, and8.0% for MB cases). The proportion of re-registeredcases was 18.7% (8.8% for PB, and 25.5% for MB cases).The proportion of wrong grouping was 12.8% (6.6%for PB cases, and 17.8% for MB cases). Approximately5.0% of leprosy cases were non-existent. Nearly 60.0%

of interviewed community members were aware ofat least one sign/symptom of leprosy; the disease iscurable and the treatment is available free of cost, butonly 12.0% could mention the correct cause of leprosy(germs/microbiological agent), whereas rest ascribedit to curse of god, low immorality, hereditary, or didnot know.

Field reports were centrally collated, analyzed, andthe findings shared with all stakeholders includingmedical colleges through national and state reports.

This complimentary massive public health monitoringexercise was well planned, executed, appreciated,and accepted by all. Further, this intense periodicalshort-term movement also led to infusion of catalyticmotivation, sharing of experiences, and reinforcedcommitment of health workers from interior areas whenthey were visited by national and international experts,

which further led to overall strengthening of supervisoryenvironment in the states. In the history of public healthachievements, LEM exercise would be considered asa remarkable developmental milestone in the journeytowards leprosy elimination.

Because the disease is unevenly distributed, hencethe importance of case nding and education surveyscannot be ignored in our country. There may not beany cost-effective analysis of such similar activitiesavailable, but block level leprosy awareness campaign(BLAC), special area project for elimination of leprosy(SAPEL), leprosy elimination campaign (LEC), and

modified LEC (MLEC) have a special referencein context of leprosy elimination. With decline inprevalence of leprosy, there is a denite risk of lowcapacity to diagnose leprosy in field conditionscoupled with poor societal governance, in-adequatesystem surveillance, complacency, under-reporting,decreased funding, and eventually leading to a fearof resurgence. This fear is not unfound as there aresporadic reports suggestive of under-diagnosis/missing of new leprosy cases. (3,4) In addition, issues ofsustenance and role diversication have been intensefor dedicated leprosy institutes/NGOs/workforce.

With the approval of 12th ve year (2012-17) plan, NLEPhas infused spirits and renewed its commitment andemphasis on elimination of leprosy from high endemicareas in the country through improved domestic programfunding; access to services through special area activity;involvement of women including leprosy affected personsin case detection; organization of skin camps for detectingleprosy patients while providing services for other skinconditions; capacity building including provision ofcontractual staff (public health consultant, surveillancemedical officer, DPMR/Training consultant, districtleprosy consultant, physiotherapist, para-medical worker

etc); undertaking contact survey to identify the source inthe neighborhood of each child or MB case in conjunctionwith sustained awareness generation activities. Priorityarea would be identified districts with Annual NewCase Detection Rate of more than 10/100,000 populationthrough active search of cases and validation of MB andchild cases in a campaign mode. NLEP activities hadintegrated with general health care system in all the statesby 2002-04 and currently services are being providedunder unied National Rural Health Mission. However,a district nucleus team consisting of dedicated medical

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ofcer, nonmedical supervisor, and a physiotherapisthas been proposed, who are expected to visit respectivePHCs and asses NLEP activities on regular basis. Trainingof newly inducted medical ofcers is planned in a phasemanner. Modied SET scheme for NGO involvement isoperational through decentralized state based approachsince 2006-07 and a proposal to introduce new NGO

Scheme is under consideration. An incentive of Rs. 8,000/will be paid to all persons affected by leprosy undergoingmajor re-constructive surgery (RCS) irrespective of theirnancial status at the designated RCS centers, who arealso given funds @ 5000/- per surgery for aids/appliance/drugs/dressings/ancillary etc. Funds are being releasedto national/regional leprosy institutions for their re-vitalization. National Sample Survey was carried in theyear 2010 to assess leprosy burden, disability load andto ascertain IEC status. Drugs would be provided free ofcost by WHO through Novartis upto 2020. To conclude,program has re-positioned itself to tackle ensuing

challenges and making planned progression with a ‘hope’of eliminating the disease from all the districts/blocksand probably, one day text-books of public health will bewriting ‘obituary’ for leprosy as for small-pox.

Acknowledgements

Central Leprosy Division, Directorate General of Health

Services, Ministry of Health and Family Welfare, Nirman

Bhawan, New Delhi.

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DOI:

10.4103/0970-0218.132713

Sandeep Sachdeva, Ajay K. Sood1

Department of Community Medicine, Post GraduateInstitute of Medical Education and Research,

Dr. Ram Manohar Lohia Hospital,1Department of Education and Training,

National Institute of Health and Family Welfare,New Delhi, India

E-mail: [email protected]

References

1. Weekly epidemiological record. World Health Organ 2013;88:365-80.

2. NLEP update: 31st Mar 2013. Available from: http://nlep.nic.in[Last cited on 2013 Aug 15].

3. Kumar A, Hussain S. The burden of new leprosy cases in India: Apopulation based survey in two states. Tropical Medicine ISRN;2013. Available from: http://dx.doi.org/10.155/2013/329283[Last cited 2013 Sep 5].

4. Shetty VP, Thakur UH, D’souza E, Ghate SD, Arora S, Doshi RP,et al . Detection of previously undetected leprosy cases in adefined rural and urban area of Maharashtra, western India.Lepr Rev 2009;80:22-33.

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Leprosy Elimination Monitoring (LEM) in India: A Novel Exercise of Monitoring, Learning, and Capacity Building