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Accelerating towards a Leprosy Free India through innovative approaches in the National Leprosy Eradication Programme (NLEP), India

India is the country with the highest burden of leprosy in the world. In 2015–16 because new case detection remained persistent and the rate of Grade 2 Disability (G2D) in new cases was rising, new initiatives to promote early case detection were developed. The new measures and the indicators being used to monitor progress towards the goal of a leprosy free India are described.

Cite this article
Anil Kumar, Deepika Karotia;
Accelerating towards a Leprosy Free India through innovative approaches in the National Leprosy Eradication Programme (NLEP), India; Leprosy Review; 2020; 91; 2; 145-154; DOI: 10.47276/lr.91.2.145
LEPROSY
Leprosy Review
0305-7518
British Leprosy Relief Association
Colchester, UK
Introduction
In India, a national programme for leprosy, entitled the National Leprosy Control Programme (NLCP) was started by the Govt. of India (GoI), in 1955, wherein dapsone domiciliary treatment was given through vertical units and survey, education and treatment activities were implemented to control leprosy. In 1983, NLCP was renamed the National Leprosy Eradication Programme (NLEP), wherein Multi-Drug Therapy (MDT) consisting of dapsone, clofazimine and rifampicin, was initiated as standard treatment for leprosy as recommended by the World Health Organization (WHO). During the forty-fourth World Health Assembly in May, 1991, a resolution to eliminate leprosy as a public health problem by the year 2000, was adopted, with the target of reducing the prevalence rate of leprosy to <1 case per 10,000 population. In order to strengthen the process of elimination, World Bank supported projects were implemented in India from 1993 to 2004. As an effect of these continuous active case detection drives, NLEP achieved the elimination of leprosy as a public health problem, at the national level in 2005.1
After the launch of the National Rural Health Mission (NRHM) in 2005, NLEP was subsumed under the aegis of NRHM and implemented as a centrally sponsored scheme. Although the disease had been eliminated at the national level, there were Districts and Blocks with a prevalence rate >1∕10,000 population and new cases still continued to occur. A special report of the National Sample Survey (NSS) conducted in collaboration with the Indian Council of Medical Research (ICMR) institutions, NLEP, Panchayati Raj Institution (PRI) members and treated leprosy patients, to detect new cases of leprosy in 2010, suggested that there might be 287,445 to 380,851 hidden cases of leprosy in the community.2
In India, the reporting year consists of the period from 1st April to 31st March. During the year 2015, a situational analysis of major indicators found that trends of two indicators, the Annual New Case Detection Rate (ANCDR) and the Prevalence Rate (PR) were almost static between the years 2005–06 and 2014–15. Over the same period, the rate of Grade 2 Disability (G2D) among new cases increased by 2.74 percentage points.
The quantum of infection (active cases) is the major determinant of leprosy transmission in the community. In addition, reporting of leprosy cases with disability reflects delay in detection, so that cases remain untreated for longer in the community.3
In view of the above evidence and explanations, several major issues faced by the NLEP during that period were identified, including delay in case detection, hidden case loads in the community, low awareness regarding leprosy in the community and lack of quality monitoring within the programme. In order to address these issues, in addition to the routine activities, various innovative activities were introduced and implemented in NLEP from the year 2015 onward, in a phased manner.
The list of innovative approaches, grouped by theme, was:
I.
Enhance active and early case detection: Three pronged strategy, (i) Leprosy Case Detection Campaigns (LCDC) (specific for high endemic districts), (ii) Focussed Leprosy Campaigns (FLC) (for hot spots, such as rural and urban areas where G2D case is detected in low endemic districts), (iii) Special plan for case detection in Hard To Reach Areas (HTRA).
II.
Enhance early reporting of cases: (i) Sparsh Leprosy Awareness Campaign (SLAC) (ii) ASHA Based Surveillance for Leprosy Suspects (ABSULS).
III.
Prevention of leprosy amongst contacts: Post Exposure Prophylaxis (PEP) administration to contacts.
IV.
Overall strengthening of the programme with special emphasis on monitoring and feedback: (i) Nikusth: an online reporting system with patient tracking mechanism, (ii) G2D case investigation.
Objectives
1.
To detect cases in the community early, through active case search and early case reporting.
2.
To prevent leprosy and interrupt transmission of disease in the community.
3.
To strengthen the National Leprosy Eradication Programme, India.
Methodology
(I) In order to enhance active and early case detection, a three-pronged strategy was introduced:
i.
Leprosy Case Detection Campaigns (LCDC): In order to supplement the efforts of the state and eliminate leprosy from high endemic areas, LCDCs were initiated in high endemic districts since the year 2016. The criteria for defining high endemic districts initially was a prevalence rate of more than 1∕10,000 population during any of last three years; this was later changed to G2D rate among new cases of more than 3% and an absolute number of G2D cases of more than 2 during the last reporting year.
This is a unique initiative in which house to house visits were conducted by trained search teams including both female and male volunteers to enable physical examination of both the sexes: male by male volunteers and females and children (above 2 years) by female volunteers, in a well-lit room, with minimal clothing to maintain privacy. The suspects were identified as per the case definition of suspects given in the guidelines, followed by confirmation by the MO, PHC. Various committees were formed at each administrative level, National, State, District, Block to plan and implement the LCDCs. Intensive Information Education and Communication (IEC) activities, through various media, were conducted before and during each LCDC. Focused training was provided to health functionaries working under NLEP at each administrative level.
During LCDC days, physical examination of each community member was performed by a trained search team composed of one male and one female volunteer. The search team was responsible for covering a population of 1000 in 14 days, through house-to-house visits as per prearranged micro-plans. Supervision of house-to-house search activities was done through identified field supervisors. Continuous, systematic collection and compilation of reports from the search teams and supervisors was followed through predesigned formats. Central monitors paid visits to States as representatives of the Central Leprosy Division (CLD) to monitor the implementation of the campaigns. The evaluation of LCDCs was performed by independent evaluators identified by the CLD.3,4
ii.
Focussed Leprosy Campaigns (FLC): Reporting of even a single G2D case indicates that cases are being detected very late and there may be several hidden cases in the community. Hence, any village or urban area in a low endemic or non-LCDC district, where even a single G2D case is detected, is to be considered as a hot spot. In these hot spots in low endemic districts, which are not selected for LCDC, house-to-house visits within 15 days of the G2D case being identified, are conducted by Accredited Social Health Activists (ASHA) or Multi Purpose Workers (MPW), to examine each resident of the households of the area. The suggestions for case search in different areas are:
a.
Villages – Each house of the whole village.
b.
Urban areas – 300 households around the location of the G2D case.
iii.
Special plan for case detection in Hard To Reach Areas (HTRA): A Hard To Reach Area (HTRA) is an area where it is difficult to establish a good surveillance system for leprosy. In HTRAs it is difficult for a health worker to go and work, and also community members themselves are not able to reach health care institutions to avail services, due to geographical, administrative, political or other reasons.
In order to address the specific healthcare needs of HTRAs, it is suggested that customised village or urban unit plans are prepared. The implementation of HTRA plans in each HTRA unit (there may be several in any urban or rural area) is to be ensured through a specific local HTRA team. HTRA teams are composed of a nodal person who is identified by the local health system and community members who are identified by the nodal person. HTRA units with identical special needs may be assembled as a cluster by States or Union Territories (UT)s. Further, informal Planning, Sensitization and Training workshops for all HTRA teams, preferably within a cluster, are conducted by the State with an emphasis on suspect identification as per the suspect case definition, being followed under NLEP; other topics covered in the training include the proper flow of information, the supply of multi-drug therapy (MDT) and other logistics. After the training, routine HTRA teams identify suspects and refer to local medical practitioners for confirmation. The treatment completion and management of complications is to be ensured through regular supply of MDT to HTRA teams and the establishment of a referral system.
(II) In order to enhance the early reporting of cases from the community, two innovations were introduced:
i.
Sparsh Leprosy Awareness Campaigns (SLAC): In order to reduce stigma and discrimination, the Sparsh Leprosy Awareness Campaign (SLAC) was introduced and launched on 30th January, 2017 – World Leprosy Day and also Martyrs’ Day of Mahatma Gandhi ji. It became an annual activity wherein nationwide IEC activities targeted to enhance early case detection were conducted through special village level meetings organized by Gram Panchayat (executive committee of Gram Sabha), in cooperation with allied sectors of the health department. Every year the event is organized with a different theme. Major activities conducted in village meetings are given below:
a.
Message by District Magistrate (read by DM or other senior administrator if available, or Gram Sabha Pramukh).
b.
Appeal from Gram Sabha Pramukh or PRI members.
c.
Local IEC activities, role play or Nukkad Natak (street theatre) by community members on different themes provided by CLD.
d.
Questions and Answers (Q&A) session based on Frequently Asked Question (FAQ) provided by CLD.
e.
Vote of thanks by community persons, preferably by a willing person affected if available in the village.58
ii.
ASHA Based Surveillance for Leprosy Suspects (ABSULS): ABSULS is a routine activity introduced in 2017 with the following objectives:
a.
To conduct active surveillance of any leprosy suspects.
b.
To prioritize leprosy case detection by ASHA.
c.
To improve monitoring and supervision of leprosy case detection activities at village level.
Accredited Social Health Activist (ASHA) workers, who are representatives of the community to the health system and accountable for the health conditions of approximately two hundred households, are asked to submit the number of suspects identified during the previous month with their signature in the monthly meetings. The surveillance reports submitted by the ASHAs are compiled by the Medical Officer (MO) at the Primary Health Centre (PHC) (usually block level) and submitted to the District Leprosy Officer (DLO). All DLOs submit the block’s compiled reports to the State Leprosy Officer (SLO) and the final surveillance report is submitted by each SLO to CLD. This information is validated through field visits by the immediate supervisor at each level, by random selection. This active surveillance by the community itself and validation even of the absence of cases by the health system, is the gold standard to ensure routine early detection of leprosy cases, mostly without disability.9
(III) In order to prevent the occurrence of leprosy amongst contacts of leprosy patients and to interrupt the transmission of disease in the community, Post Exposure Prophylaxis (PEP) administration to close contacts of leprosy cases was introduced through LCDCs in September, 2016 and then expanded to the whole nation in October, 2018. Later, the World Health Organisation (WHO) recommended the administration of PEP to close contacts of leprosy patients and at present PEP administration is being followed as per the steps given below:
After confirmation of a case, the MO PHC informs the Multi-Purpose Worker (MPW) of the concerned Sub-Centre (SC) to take the necessary action.
The MPW visits the house of the confirmed case, along with the ASHA and takes consent from the case regarding identity disclosure and PEP administration to contacts of cases.
Household and close contacts will be identified and screened for leprosy after taking informed consent; any suspect will be referred to the MO for confirmation.
All contacts other than those suspected for leprosy will be screened for any exclusion criteria. Eligible contacts to be administered with PEP after consent.
In case any contact is not available at home, exclusion criteria will be assessed with the help of family members by MPW and prophylactic dose will be handed over to the ASHA, who will take informed consent before administration. In all cases, the administration of PEP is to be directly observed.
Records to be maintained at each level for final submission to CLD.10
(IV) In order to strengthen the programme with special emphasis on monitoring and feedback, two innovations were introduced:
i.
NIKUSTH: Nikusth is an online reporting system with a patient tracking mechanism launched by the then Health & Family Welfare Minister, Government of India, which will roll out in all blocks of the country in a phased manner. In this system, data entry at the peripheral level is done, using a comprehensive reporting format formed and digitalised to enable entry into the Nikusth software, for recording and reporting of cases detected through ABSULS, LCDC or otherwise. The strengthened implementation of Nikusth after enabling data entry from all blocks in due course will lead to effective monitoring and patient tracking, creation of a database of cases, early data analysis and prompt feedback.
Under the present reporting system there is a time lag of around 3 weeks to 1 month, but with the introduction of online reporting, the reports will be available as and when the entry is done by peripheral health staff. It is under development during the current time period.
ii.
G2D case investigation: States or UTs are advised to investigate all new G2D cases being reported to the healthcare system, within 15 days of reporting. A format for interview of G2D cases has been designed to find out the factors responsible for the delay in reporting. Understanding the most frequent reasons for delay will help in planning better interventions under the programme. It will help in mapping problem areas and defining priorities for appropriate interventions.
The implementation of all these innovations is being strengthened at national level by the overall strengthening of NLEP activities with appropriate administrative actions.
Results
More than 90,000 hidden leprosy cases were detected in high endemic districts through 14-day house-to-house searches, during the Leprosy Case Detection Campaigns (LCDC) in 2016, 2017 and 2018.
All villages in India formed the denominator for SLAC, of which around 60%, 75% and 67% (in the years 2017, 2018 and 2019, respectively) carried out village level meetings for IEC messaging on the theme of enhancing early case detection. Impact assessment was done on the basis of a reduction in the G2D rate among new cases, which is a proxy indicator of early case detection.
Routine case detection was strengthened with the introduction of ASHA Based Surveillance for Leprosy Suspects (ABSULS) in the community. During the 2018–19 period, 98,256 suspect cases were referred and 46,184 were confirmed as leprosy cases.
Total contacts screened during the 2018–19 reporting year were around 555,000 of whom around 341,000 were given rifampicin as PEP.
Total FLCs conducted during the 2018–19 reporting year were 634, through which 314 leprosy cases were confirmed.
More than 1500 special plans for HTRA were prepared between 1st April 2018 and 31st March 2019.
The G2D rate among new cases decreased from 4.61% in 2014–15 to 3.05% in 2018–19, which indicates that a large number of new deformities due to leprosy have been prevented in these four years.
Figure 1.
The trend of G2D rate in new leprosy cases actual vs projected, from 2011–12 to 2018–19.
Figure 2.
The trend of G2D/ million population from 2010–11 to 2018–19.
And above Figure 1 shows that after the introduction of innovations in year 2015–16 the linear trend of G2D rate among new cases was reversed.
The G2D rate among new cases decreased from 4.48/ million population on 31st March, 2015 to 2.65/million population, on 31st March, 2019 which is historically now at its lowest level (Figure 2).
The percentage of child cases among all new cases decreased from 9.04% in 2014–15 to 7.67% in 2018–19, (Figure 3), historically at its lowest level, which suggests that transmission of the disease is being reduced.
Discussion
In ‘Leprosy: overcoming the challenges, a report of an international summit, 24–26 July, 2013, Bangkok, Thailand,’11 major technical challenges reported by national leprosy programmes included the continued occurrence of new cases, and the need to improve the quality of care, early detection of cases, laboratory services and the management of contacts.
Figure 3.
The trend in child rate among all new leprosy cases detected from 2014–15 to 2018–19.
According to the special report of the National Sample Survey (NSS)2 and a situational analysis done in 2015 by the present authors, major issues identified by NLEP, India were delay in case detection, hidden case loads in the community, low awareness regarding leprosy in the community and the lack of quality monitoring. In order to address these challenges and to improve the programme, various innovations were introduced from 2015 onwards, in a phased manner.
The innovations introduced in the programme were aligned with the Global Leprosy Strategy (GLS), 2016–20, which was released in 2016. Key messages included a focus on early case detection before visible disabilities occur, with special focus on children, to reduce disabilities and transmission. Campaigns in highly endemic areas or amongst higher risk groups were also suggested. This would result in earlier detection and a reduction in the number of patients with G2D at the time of diagnosis. Plans to ensure screening of all close contacts, especially household contacts were recommended. The target was to have all household contacts screened. The GLS, 2016–20 also suggested incorporating specific interventions against stigma and discrimination due to leprosy, by establishing effective collaboration and networks to address relevant technical, operational and social issues, which would benefit persons affected by leprosy.12 India had already made a plan to work on these issues by 2015.
The idea of ‘elimination trauma’ was explained by Mr. Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, in his newsletter. He said that ‘…once a country has eliminated leprosy as a public health problem (defined as less than 1 case per 10,000 population), those in charge breathe a sigh of relief. At the same time, they live in fear of case numbers going up again. Although it should be a noble mission to discover and treat as many new cases as possible, for some years now annual new case numbers in many countries have levelled off. I think this is because health ministries are embarrassed at the thought of once more becoming a country that has not achieved elimination. In 2016, however, India shattered that mindset with its proactive approach.’13
The statement mentioned above is evidenced by the Global Leprosy update for 2018, where it was reported that in 2018, out of around 210,000 new cases reported globally, around 120,000 (58%) are contributed by India. The South East Asian Region (SEAR) contributed 71% of the new leprosy cases detected globally and 2 countries of the region, i.e. India and Indonesia, detected 92% of the new cases in SEAR.14
In order to achieve the target given by WHO, India is making every effort to detect cases early, before the onset of disability. Before LCDC was implemented in high endemic areas, cases were hidden and were often reporting after the development of G2D. During LCDCs many of these hidden cases were detected, leading to a reduction in G2D among new cases.
Apart from LCDCs, through ABSULS a system has been initiated to ensure that suspects will be identified more quickly and referred to the PHC, which will ultimately lead to early case detection. Acceptance of the approach by health workers and district level programme managers leads to successful implementation. ABSULS is leading to overall strengthening of the ASHA system by ensuring effective performance of their duties related to early leprosy case detection.
A major enabling factor for the effectiveness of each innovative activity was the political will to improve the programme scenario. In addition, the enthusiastic involvement of the national programme manager in conceptualisation, finalisation, implementation and monitoring of all innovations and regular advocacy at various levels with continued support of all partners and stakeholders of the NLEP, has helped India to achieve these results.
As these activities were not part of a research study in a controlled environment, but strategies of overall programme implementation, several difficulties were faced during implementation, including timely procurement, logistics and the supply of various goods. The implementation of LCDCs in all selected States and UTs could not be completed in one time frame, in the vast country of India.
However, despite of all these hurdles, the journey of NLEP is continuing towards achieving a leprosy free India by 2030. This prediction may come true, if after quality case detection activities, India achieves and maintains a G2D rate among new cases as low as 2% by 2021; that level suggests effective early case detection and the possibility of reduced transmission in the community.15 However, as some leprosy cases only show symptoms up to 20 years or more after infection,16 the incidence and prevalence may continue to occur.15 The correctness of the path taken by NLEP, India will be evident through the downward trend of major indicators, i.e. G2D rate among new cases, child rate among new cases, and G2D/million population.
Conclusion
Strengthened implementation of various innovations introduced in the NLEP, India, are effective in detecting leprosy cases early, before the onset of disability. Through these efforts, the country is steering in the direction of achieving the stated goal of the Global Leprosy Strategy (2016–2020) and a Leprosy Free India.
Review board approval
All the innovations were introduced in National Programme after the approval of competent authority.
Conflicts of interest
The authors declared no potential conflicts of interest with respect to the research, authorship, or publication of this article.
Funding (including statement of independence from funders)
The article is the programme intervention detail fully funded by Government of India. Special funding statement not applicable.
Contributorship statement including name of guarantor
Not applicable.
Patient consent statement
No patient consent was required.
Data sharing statement if appropriate
Not required.
Acknowledgements
The authors acknowledge and thank the programme managers of all States and Districts of India. Their dedicated hard work and the concerted efforts of Medical Officers (MO), Health Workers, ASHAs, volunteers, is acknowledged. The authors acknowledge the support provided by stakeholders of the programme from Government health system, i.e. State/ District/ Block administrators, representatives from Central Leprosy teaching, training and research institutes, Regional Office of Health and Family Welfare (RoHFW) and partner organisations i.e., WHO, ILEP, APAL, NGOs and Panchayati Raj Institutions’ in implementation of all activities of the programme. The acknowledgement is also extended to data analysts and numerous data entry staff of various administrative levels for their support and efforts in compilation of the data.
References
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[3]KumarA, RoyR, KarotiaD. Leprosy Case Detection Campaign (LCDC): An approach to accelerate progress to achieve Leprosy Free India. Indian J Lepr, 2019; 91: 125137.
[4]Revised Operational guideline for LCDC, 2016, Central Leprosy Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India.
[5]KumarA, RoyR, PrasadJ. Sparsh Leprosy Awareness Campaign: An approach to create mass awareness on Leprosy. Indian J Lepr, 2017; 89: 151160.
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[7]Guidelines for Sparsh Leprosy Awareness Campaign, 2018, Central Leprosy Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India.
[8]Operational guidelines, Sparsh Leprosy Awareness Campaign, 2019, Central Leprosy Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India.
[9]Guideline for ASHA Based Surveillance for Leprosy Suspects (ABSULS), Central Leprosy Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India.
[10]Operational guidelines for Post Exposure Chemoprophylaxis, 2019, Central Leprosy Division, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India.
[11]Leprosy: overcoming the challenges, report of international summit, 24–26 July, 2013, Bangkok, Thailand.
[12]Global Leprosy Strategy, 2016–2020, Accelerating towards a leprosy free world, World Health Organisation 2016.
[13]WHO goodwill ambassador for leprosy elimination, newsletter, December, 2017, No. 88.
[14]Global Leprosy Update. Weekly Epidemiological Record, 2019; 94: 389412.
[15]WHO goodwill ambassador for leprosy elimination, newsletter, February, 2019, No. 93.
[16]WHO key facts on Leprosy, last accessed on website https://www.who.int/news-room/fact-sheets/detail/leprosy.