NLEP Newsletter January March 2018, Vol. 2, issue 5. Quarterly Publication from the House of Central Leprosy Division MESSAGE FROM DDG (LEPROSY)

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NLEP Newsletter January March 2018, Vol. 2, issue 5 NLEP Newsletter Quarterly Publication from the House of Central Leprosy Division MESSAGE FROM DDG (LEPROSY) It is with great pleasure and humility, I am contributing in the 4 th edition of quarterly newsletter of F.Y. 2017-18, witnessed the successful introduction of several initiatives under NLEP. From centre the thrust was given again on early case search and several new strategies have been introduced in last 2 year for early case detection. The lead story in this issue is about the reported substantial reduction of G2D in Dadra & Nagar Haveli in 2017-18 which is a great success achieved by effective implementation of NLEP guidelines and important initiatives introduced in last two and half years. I am Happy to share the news that Central Leprosy Division has extended its collaboration with Indian Association of Dermatologists, Venereologists and Leprologists (IADVL) in order to receive technical support from specialized cader of medical field i.e. Dermatologist. The nationwide IEC campaign was conducted across India till village level, Sparsh Leprosy Awareness Campaign on the Anti Leprosy Day i.e., 30 th January, 2018 was celebrated wherein Gram Sabha meetings were called. Further, a National level meeting with all CBO and NGO partners was organized from the support of WHO for extending the support from Development partners in terms of NGO scheme program, there are about 80 NGOs working in the NLEP NGO scheme. I hope readers will find this issue of newsletter very useful and look forward for your constructive feedback. Lead Story IN THIS ISSUE - Substantial Decrease in Leprosy Grade II Disability in Dadra Nagar Haveli Best Practices - Innovative Activities: simple but effective Success Story - Story from curse to cure: pain to Paint Highlights - Cooperation between NLEP and IADVL: A beginning of new partnership Meetings and Gatherings - National Meeting to ensure effective participation of CBO/NGO News around - Anti Leprosy day celebration across India 1

LEAD STORY Substantial Decrease in Leprosy Grade II Disability in Dadra & Nagar Haveli Disability Prevention, Management and Rehabilitation (DPMR) is an important component of NLEP as in Leprosy, visible deformities i.e. grade II disability is the key factor behind stigma associated with it as well as the only morbidity attracting the highest concern for disease control, elimination or eradication! Dadra & Nagar Haveli, having the highest disease burden in terms of PR and ANCDR in the country, has been trying its best to curb the Grade II disability due to Leprosy in the UT for last 2-3 years. All the components of DPMR were implemented by the UT and for the first time and RCS camp was organized in December 2015. In the year 2015-16, 8 cases of grade II disability were reported among new cases. Although the absolute number was not high, 8 cases of G2D in a population of about only 4.2 lakhs is alarming situation indicating more hidden cases. In 2016-17 again 8 such cases were reported taking the grade II disability rate at the time of diagnosis from 1.88% in 2015-16 to 2.08% in 2016-17. This was taken as a setback for DPMR activities in the Union Territory and a program review was done by the State. It was realized that RCS is not the true solution for G2D but solution to prevent the development of disability is to detect cases early. Field visit: Monitoring from Central team It was found that pure neural cases were being missed by the heath staff including Medical Officers. Also, the working population was being missed in the active case finding campaigns (LCDCs or SAPs). To handle these issues, all the General Health Staff & ASHAs were sensitized to screen for sensory loss in addition to hypo-pigmented patch and visible deformity. Three rounds of active case finding drives (first round of active search by General Health Staff & two rounds of LCDC) and one round of Focused Leprosy Campaign was carried out. To screen the working population, male MPWs, PMWs and NMS were deployed for the evening time (6pm -8pm) to screen out the suspects. Due to these measures, there was no G2D at diagnosis (during 2017-18) in the UT till 29 th March 2018. A single case with Gr II disability was confirmed on 30th March 2018. 2

Although the UT marginally missed a year free from G2D at diagnosis, it has succeeded in bringing down the G2D at diagnosis from 2.08% in 2016-17 to 0.36% in the year 2017-18. We hope and will do our level best to keep the year 2018-19 free of Gr II disability at diagnosis by early detection of cases. BEST PRACTICES By SLO, D&NH Newer Initiatives Undertaken: Simple but effective Survey at Construction sites: State Health Society, Chandigarh organized a survey at construction sites in U.T., Chandigarh from 22.01.2018 to 28.02.2018. A survey was conducted by 2 teams. Each team had one female and one male member. Total 10 areas were covered during the survey and 3 Paucibacillary patients were detected from construction sites of PGIMER, Sarangpur and Labour Chowk Sector 40. The patients have been put on further treatment. Post Exposure Chemoprophylaxis (PEP): As per guidelines from Govt. of India, SHS, Chandigarh implemented Post Exposure Chemoprophylaxis (PEP) with a single dose of Rifampicin to the contacts of the index cases detected during Leprosy Case Detection Campaign (LCDC), F.Y. 2017-18. There were 4 leprosy cases detected during LCDC against which 88 contacts were identified and PEP was administered in 62 cases (adult: 45, children : 17). This initiative was taken by the UT to identify cases early among vulnerable population. 3 SUCCESS STORY Story from curse to cure: pain to Paint The concept of rehabilitation as an integral part of therapeutic response to disease and residual disability has been slow to emerge. Consideration of the quality of life that may have been rescued from death has all too often been disregarded: Use of the term "rehabilitation" reflects recognition that

the absence of death does not necessarily insure health. If the "cured" patient is unable to preserve or resume his place in the family or community as an independent, self-respecting, respected and contributing member, the healing process has not been completed. Socioeconomic rehabilitation of those cured of Leprosy but having G2D by Leprosy need to be addressed. Occupational or Vocational rehabilitation is a platform to restore and restart as a new way of life for people affected by leprosy. For leprosy affected people this unique process far away from charity means a resurrection into a life, in which they are met with esteem and respect. receiving alms. The artist ages ranges between 30 and 92 years and most are illiterate and migrants. Artist draws from their own intense life experience to produce impressive paintings. By Latika Rewaria (Consultant, CLD) HIGHLIGHTS Cooperation between NLEP and IADVL: A beginning of new partnership Bharathapuram is one of the several leprosy colonies clustered around Chengalpattu, Tamil Nadu. Bindu Art School is a self sustaining, one of the organisations who are supporting PAL, through the painting of pictures at international exhibitions, as well as locally and online, the students attain financial independence without the discrimination of 4 Indian Association of Dermatologists, Venereologists and Leprologists (IADVL) is a registered society started in 1973. At present it has more than 10,000 qualified dermatologists as its members all over India. Many members are professors, heads of department and faculty at various state and central medical institutions, apart from being active private practitioners in cities, districts and at taluq level all over India. In addition, good number of leprosy workers and experts are also members of IADVL. Many IADVL members all over India are highly motivated to work for leprosy and are actively involved in its early diagnosis & initiation of multi drug therapy (MDT). Significantly, the post MDT care of patients, such as management of leprosy

reactions and its complications, including disability are routinely taken care by its members at dermatology departments of medical colleges and of other hospitals & institutes. In addition to the care of leprosy patients, IADVL has been contributing for the cause of leprosy by being exclusively involved in teaching of leprosy, both at Undergraduate and PG level in India. IADVL national executives met DDG (leprosy), Ministry of health & family welfare, GOI, with a proposal to work together for leprosy: IADVL national executive members, President Dr Ramesh Bhat, President-elect Dr P Narasimha Rao, Immediate past president Dr Yogesh Marfatia, and Hon Secretary General Dr Uma Shankar Nagaraju, met Dr Anil Kumar, DDG (Leprosy), Govt of India in his office at New Delhi on 6 th April, 2018, with a request to associate and work hand-inhand with NLEP to attain the vision of Leprosy free India. The national executive members apprised Dr Anil Kumar that IADVL is ready to work along and extend assistance to implement the policies and programme of NLEP and GOI at grass root level through its members who are spread over far and wide all over India. The IADVL President expressed that the possible areas where IADVL and NLEP could work together are: State / regional IADVL representative to co-ordinate with the state Leprosy officer (SLO) of each state to provide leprosy experts/ resource persons to screen suspects during leprosy detection campaigns (LCDCs) Organize workshops/basic leprosy training/updates for leprosy workers / Ayush medical practitioners and other in the field and at district level periodically and also to create educational programs for the masses work along with NLEP by providing inputs and guidelines for management of high bacillary cases and patients with severe recurrent / steroid dependent ENL, to develop and propagate the use of a mobile app for notification & registration of new cases seen by various dermatologists at their private clinics and hospitals all over India. Co-operate in other areas where IADVL expertise and manpower can be used, including to further the research in leprosy. This partnership and cooperation between private and government agencies would bring to fore more workforce and wherewithal to fight leprosy in India with initiative in sync with the theme accelerating towards leprosy-free world proposed by WHO for years 2016-2020. - Dr P Narasimha Rao,National IADVL, India 5

News Around Mass Awareness: Anti Leprosy day celebration and SPARSH Campaign SPARSH: Declaration by District collector cum District Magistrate, Health Secretary at Lakshadweep Every year of January is being utilised in generating awareness against Leprosy. 30 th January, the Anti Leprosy Day was celebrated across India along with SPARSH Leprosy Awareness Campaign. In Gujarat Anti Leprosy Day Celebration had been celebrated at Porbandar the birth place of Mahatama Gandhiji. Anti Leprosy day celebration done by State level under the Chairmanship of Honorable Deputy Chief Minister of Gujarat at Porbandar for awareness, reducing stigma and discrimination against people affected by Leprosy. SPARSH: Pledge taking at School SPARSH: engagement of community during awareness campaign at Jammu & Kashmir Gimps of celebration Anti Leprosy hoarding being displayed at public health facility of Jammu & Kashmir. 6

Introduction of SAPNA: NLEP unveils a new mascot for Sparsh Leprosy Awareness Campaign 2018 National Leprosy Eradication Programme (NLEP) has introduced a mascot Sapna - for its Sparsh Leprosy Awareness Campaign 2018, with the tagline Kyunki Sapna hai kusht mukt Bharat ka. Sapna was conceptualized by the Central Leprosy Division, along with one of its partners, The Leprosy Mission Trust India. Sapna has a rural background and can easily be identified with any ordinary child from our villages. Leprosy awareness messages spread through Sapna is expected to reach the doorstep of the community during the campaign. This will help in promoting community participation to reduce stigma and discrimination against people affected by leprosy and promote early case reporting. Mascots in community campaigns are one of the most effective ways of bonding with the community and spreading awareness. Sapna gives an inspiring visual identity to leprosy, which is associated with stigma and exclusion. We strongly believe this initiative will help us in realizing our vision of a leprosy-free India. By Jacob Oommen (TLMTI) MEETINGS & GATHERINGS National Meeting to ensure effective participation of CBOs/NGOs The engagement of the community with the programme is need of the hour, as government of India cannot attain the vision of Leprosy Free India, working in a separate compartment. Hence, in order to increase inter-organizational transparency and responsiveness of CBOs/NGOs two days National level meeting for Community Based Organizations (CBO)/ Non Government Organizations (NGO) working under NLEP was conducted on 20 th 21 st March, 2018 at Bhopal Madhya Pradesh with the support of WHO. The meeting started with inaugural session chaired by Dr Dharamshaktu, Principal Advisor- Public Health, MoHFW, GoI (Chief Guest), Dr Anil Kumar (DDG- Leprosy), Dr Anoop Puri (ADDG- Leprosy), Dr Rashmi Shukla (NPO, NTD,WHO), Mr Narasappa (National President APAL) Dr A Baronia (SLO, MP) and Dr Kavita Bhattarai (NGO, Little Flower). 7

Dr Anil Kumar, DDG (Leprosy) gave a brief on the efforts made by Central Leprosy Division in the last two and a half years. He presented the major findings of the data of last 10 years (2005-15). He advocated the need of early case detection for reduction of G2D. He also highlighted the success of LCDC: about 35,000 new cases were found in the first LCDC campaign. He also talked about the efforts made by all states during the SPARSH awareness campaign. He discussed the provisions made in the NGO scheme in the program since 2013. There are about 80 NGOs working in the NLEP NGO scheme and there is budgetary allocation of Rs 4 Crores which remains unutilized. He informed the house that the global target set by WHO for leprosy has to be achieved in India by 2019, well ahead of the set target date of 2020. Dr Anoop Puri (Additional DDG- Leprosy) shared the details of each of the six schemes under NGO schemes 2013. He also informed about the financial provisions and guidelines for each of the schemes. He talked about the criteria for applying to each of the schemes and that any willing NGO can apply for even more than one scheme provided the organization is not accepting any other grant from any other source for the same work. It was a successful meeting; around 25 actively NGOs/CBOs from seven states participated and presented their work/contribution in the field of Leprosy. Presentations made by Gretnaltes, Morrampudi, Andhra Pradesh, GMLF, Wardha, Maharashtra, Kusthrog Nivaran Sangathan, Shativan, Maharashtra, usthrog Nivaran Sangathan, Baroda, Gujarat, Little Flower Leprosy Welfare Association, Gramin Chikitsak Kalyan Sanstha, Vaishali, Bihar, Gram Vikas Yuva Trust of Madhubani, Bihar, Vikas Samiti, Nalanda, Bihar, Vivekananda Ashram, Uttarakhand, Health Services, Erode, Tamilnadu, Karigari, Tamilnadu, Hind Kusth Nivaran Sangh, Indian Association of Leprologist. Indian Assosiation of Leprologist presented the contribution in preparing IAL handbook of Leprosy for Medical Officers. The minutes of the meeting has been sent to all the participants, SLOs and DLOs for necessary action. 8

SPATIAL DATA 9

SPOTLIGHT/ PHOTO GALLARY 10

Editor-in-Chief Editorial Advisor Executive Editor Editorial Board Editorial Coordinator Editorial Board Dr. B.D. Athani Dr. N.S. Dharmshaktu Dr. Anil Kumar Dr A. K. Puri, Dr M. A. Arif, Mr. John Kurien, Dr. V.C. Giri, Dr. S. Vilas Rao Gitte and Dr. Rupali Roy Ms. Latika Rewaria Technical Support Ms Deepika Karotia, Ms. Vani Jain, Mrs. Jyoti Dayal t trotptsadvatartsiiimda Mr. Sumit Kumar ttt Online version of NLEP Newsletter is available on www.nlep.nic.in Address: 550 A Central Leprosy Division (CLD), Directorate General of Health Services, Ministry of Health & Family Welfare (Govt. of India), Nirman Bhavan, New Delhi. Pin Code 110011. Disclaimer: The editorial board does not hold any responsibility for the materials contained in this publication, which is based on the information available from various sources. Reproduction of material from the NLEP newsletter, in part or in whole, is encouraged, as long as credits and acknowledgement are given. 11