NLEP Newsletter. Winaugural issue which was released on Anti. Inside MESSAGE FROM DDG (L) LEAD STORY. Volume 1, Issue 2 April 2016

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Quarterly Publication from e House of Central Leprosy Division MESSAGE FROM DDG (L) e are immensely motivated to receive your positive feedbacks on e Winaugural issue which was released on Anti Leprosy Day. We have initiated is publication wi e sheer objective of providing platform for sharing updates & highlights from e Dr. Anil Kumar, DDG(L) states, news around at national and global level, success stories, events and meetings along wi e pictures from field and states. The current issue consists of articles Newer Leprosy Control Activities Globally, Model Referral System of DPMR Activities in Odisha, Success Stories from Assam & case study of Puducherry, LCDC Brain Storming meeting in Chengalpattu (TN), Anti Leprosy Day 2016 Delhi, Mid Term Review of LPEP project DNH at Diu and many more. I hope you will find is issue of newsletter informative. We all will look forward to receive your valuable comments and feedback. Newer Leprosy Control Activities Globally The goal of Leprosy Elimination (Prevalence less an 1 case per 10,000 populations) has been achieved globally in e year 2000. In most countries ere has been a steady decline in new case detection; e rate of decline varies between countries. Even ough cases have much declined, yet indigenous cases do occur from e low endemic countries. Eradication of e disease is still a far cry. Non-availability of laboratory screening tests for early identification of an individual wi disease is also a handicap. Current Anti Leprosy Measures: The current strategy of Leprosy control is based on early case detection and MDT treatment. Towards is end, an active Case Detection in campaign approach also involving e community is encouraged. For furer reducing e burden of Leprosy, WHO had recommended, l l LEAD STORY Maintaining high level of BCG immunization Adoption of e target to reduce Grade II disability in new cases per million populations by 35% between 2011 and 2015. Volume 1, Issue 2 April 2016 Inside Lead Story...1 Newer Leprosy Control Activities Globally Best Practices...3 Model Referral System of DPMR activities in Odisha Case Study...4 Rare..but beware! Success Story...4 Don't hesitate and confidently move ahead Highlights...5 Release of NLEP Newsletter Hidden leprosy cases in Assam General Heal Camps News Around...6-7 Commemorating World Leprosy Day Tackling bo leprosy & stigma Events /Meetings...7-9 Pranab Mukherjee calls for empowering LCDC brain storming meeting Anti leprosy Day 2016 Mid Term Review of LPEP project Meeting on NHM West Zone, Update on LCDC 2015-16 Anti Leprosy Fortnight at CLTRI Spotlights/Picture Gallery... 10

Innovative Measures in countries: Complete Eradication of Leprosy still remains e ultimate aim, for which different measures are being practiced or being planned. These measures can be listed as below- 1. Uniform Multidrug Therapy Regimen (UMDT) In order to shorten e duration of treatment and simplify drug supply logistic, WHO recommended a multicentre study of 6 mon MDT regimen for M.B. Leprosy, in new cases of all types of Leprosy (MB and PB). Preliminary reports are favourable, but WHO is yet to decide on e same. Expectedly, ere has been strong criticism for is proposal to introduce U-MDT for all patients of leprosy. Many felt at U-MDT will over-treat PB leprosy patients and under-treat MB patients, especially ose wi a high initial BI. 2. Contact Surveillance A number of countries have stressed on e role of contacts in keeping e leprosy transmission intact. Survey of e household and neighborhood contacts and treatment of e positive cases detected is practiced in many countries. In India, contact survey is being practiced against all M.B. and Child cases. 3. Immunoprophylaxis of contacts (I) Vaccination of contacts wi BCG has been a policy in several countries in Latin America (Brazil, Cuba and Venezuala) and ere is evidence for its effectiveness in reducing Leprosy incidence. (ii) ICMR has reported a study wi vaccination of MIP vaccine in patients under MDT treatment for quicker clearance of e Bacilli and resulting relief from reaction. The vaccine is available in e market, and is being used by e Dermatologists. (iii)a new vaccine for leprosy has been developed by e Infectious Disease Research Institute, Seattle, USA wi funding from American Leprosy Missions. The vaccine is now entering phase I trial. 4. Chemoprophylaxis of contacts Chemoprophylaxis of contacts or of total population has been evaluated in several control trials and ere is now much evidence for its effectiveness in various circumstances. Studies carried out in Bangladesh and Indonesia gave promising results. In India, a study is under progress in e union territory of Dadra & Nagar Haveli, to see e feasibility of administration of and acceptance of single dose of Rifampicin chemoprophylaxis. 5. Mass Drug Administration New approaches to NTD control have stimulated new inking about Leprosy particular challenges relate to innovative ways to interrupt e transmission of Leprosy and secondly e need for an integrated approach to morbidity management across several diseases. 6. Monly administered ROM for MB and PB leprosy Efficacy of once a mon ROM in bo MB (for 12 mons) and PB (for 6 mons) leprosy patient is being currently conducted in Myanmar, Guinea and Senegal. The final results will be available in mid 2017. 7. Prevention of disabilities Trials in prevention of disability (TRIPOD) are multi-centre, double blind, randomized, controlled trials to investigate e prevention and treatment of nerve damage in leprosy by using corticosteroid erapy. The early findings of ese studies indicate at nerve function frequently recovers spontaneously and at prednisolone is safe, but ere are limits to its usefulness. The ILEP has come out wi a revised disability grading, wi a special emphasis on eye involvement. Most WHO/NLEP documents mention e simple ways to care for insensitive hands and feet, and e need for eye care and protection. The role of e heal care worker is to educate and enable patients in e self care process. (Submitted by National Consultant (DPMR), CLD 2

BEST PRACTICES Model Referral System of DPMR Activities in Odisha The LEPRA India has started a project in Odisha to strengen e ILEP supported NGOs / Hospitals / Projects to function as a part of GHC referral system and it will be identified as 'Referral Centres'. Considering factors such as existing disability load, convenience of management of e programme, 10 referral centres which will be established across e State. Out of which five Referral Centres will be located in existing LEPRA Projects (Koraput, Junagarh, Sonepur, Bargarh and Baripada), one at GLRA project (Puri), two at existing government institutions (Leprosy Home and Hospital, Cuttack and MKCG Medical College, Berhampur) and e rest two will be established at e government district headquarter hospitals at Angul and Sundargarh. These centres will be developed into fully operational status to meet e needs of disability care. The flow chart below describes e referral mechanism of e referral centre from e community in coordination wi block level and district level DPMR clinics up to RCS centres. After lot of ground works, capacity building of GHS staff & surgeons on RCS and strengening of infrastructure, a 'best practice' model of Referral System for DPMR Services was developed in Odisha and practiced since 2008. Appreciable achievements were obtained rough e project in terms of managements of Reaction, Nerve Function Impairment, plantar ulcers and supply of foot-wears (G-1 & G-2) & ulcer-kits. The capacities of different categories of staff were enhanced continuously rough repeated monitoring visits. Presently ere are ten Lepra supported Referral centres at Government institutions (District Hospitals at Angul, Bargarh, Baripada, Bhadrak, Bolangir, Dhenkanal, Jharsuguda, Nabarangpur, Leprosy Home & Hospital Cuttack & MKCG Medical College) and two Lepra projects wi in-patient facilities providing all sorts of DPMR services. So also ere are nine RCS centres at Government institutions strengened & supported by Lepra Society (District Hospitals at Baripada, Bolangir, Dhenkanal, Jharsuguda, Koraput, Nuapada, Sonepur, Leprosy Home & Hospital Cuttack & MKCG Medical College) and one NGO hospital at Bargarh. Since 2008 up to December 2015 more an 2100 RCS operations are done by e support of Lepra Society as e ILEP Coordinator for e state of Odisha. Village (ASHA) Sub Centre (HW) CHC (MO/PMW/ Nodal HW) District Nucleus (DLO/PT/LT/ST Apex Team (All specialists) RCS Centres (Surgeon/ SN/PT) REFERRAL SYSTEM (For DPMR Services) Any person suspected having disability due to leprosy referred to SC/PHC/CHC and on e advice of e MO/HW promote regular self-care & disability care practices; Implementation Self care demo & follow up & promotion of MVR foot-wear Advice to RCS cases - for surgery - for follow up Implementation Organise regualar weekly DPMR clinics Manage Lepra Reations/Neuritis Assess all cases of Leprosy Disabilities Provie self-care demo, ulcer fressing, ulcer-kit/dressing material, MCR-foot wear etc. Identify & refer patient needing RCS Identity patient needing G-2 footwear Repeated Counselling all cases Implementation Management of Reactions/Neuritis Management of complicated ulcers Provide Aids & appliances Selection & refer of RCS cases Follow up of RCS cases Manage foot-wear/shoe unit (G-2 manufacture & supply) Laboratory investigations Implementation Final screening, Physio assessments and admission for RCS Reconstruction/Decompression/ Amputation surgery Follow up after Reconstructive surgery RCS Review Referral Reaction/Drug Reaction Disability persons Referral Reactions/Neuritis difficult to manage Complicated ulcers Reconstructive surgery cases Patients needing G-2 foot wear Follow up of RCS cases Referral Refer RCS cases/nerve abscess for operation Refer RCS review cases Refer difficult ulcer cases (Submitted by Consultant NLEP, Odisha) 3

CASE STUDY Rare but Beware..! Dapsone Hypersensitivity Syndrome.! A 45 years old female wi Hansen's disease was commenced on MB-MDT. A week after 2nd pulse, she presented to Primary Heal Centre (PHC) wi generalized skin rashes and fever. On initial examination, generalized pruritic maculopapular rashes present and mild fever. No evidence of jaundice, lymphadenopay, malar rash or oedema. Vitals were stable. As per discussion wi Programme Manager (PM) NLEP, by PHC Medical Officer (MO) an early Dapsone Hypersensivity Syndrome was suspected and Dapsone was widrawn immediately after counselling of e patient. Clofazimine was continued. Conservative treatment was given and M.O followed up e case daily wi routine blood investigations and liaised wi PM-NLEP regularly. On 6 day, patient developed peeling of e rashes,facial oedema and malar rash wi fever. She was admitted to Govt. Medical College (IGMC&RI) in Puducherry. Blood counts were normal but she had transaminitis (Alanine and Aspartate aminotransferase were around 5 times upper limits of normal). She was managed wi supportive measures and all her problems resolved completely over e next 5 days. A vigilant supervision and monitoring of e NLEP made it possible to make is a timely diagnosis and intervention for is patient. Dapsone hypersensitivity syndrome, especially after e 2nd pulse of MDT is a rare and serious complication, which sometimes leads to dea if diagnosed late or unnoticed. But if spotted early and intervened outcome is good, as illustrated by our patient. This report highlights e standard of supervision and monitoring of NLEP activities in is horizontal implemented programme of elimination stage in Puducherry U.T. Hence Beware of is Rarest complication one can encounter during NLEP activities. (Submitted by SLO, Puducherry) Don't hesitate and confidently move ahead SUCCESS STORY This is a story of a young girl Priyanka who concurred leprosy at a very tender age. She was born to a mediocre family in a remote village of Sepkuchi under e Bihdia Block of Kamrup (R) District. She is e youngest of ree children in her family. About 6 years ago when is young girl was studying in a VII standard class she noticed 2-3 nodules on e dorsolateral part of her left ring finger which were painless and no itching, but she ignored and little did she knew at it is going to bring a change in her life and she started feeling weakness in her left palm. She told her moer about it. Her elder broer took her to district Hospital MMCH at Panbazar in e Kamrup District. Doctors suspected leprosy and smear was done which came positive for lepra bacilli. Therapy was started. However by at time she developed deformity in her left hand which she didn't disclosed to anyone. She was en referred to GMCH and restarted MDT erapy. After completion of 12 mons erapy, Reconstructive Surgery was done on August 2013. Now she is in XII standard, going to appear her HSSL final examination. She is finally living a normal life and desired to learn more about leprosy to make oer people aware about is disease. (Submitted by SLO, Assam) 4

HIGHLIGHTS Release of NLEP Newsletter & LCDC Operational Guidelines Release of LCDC Operational Guidelines and NLEP Newsletter, Delhi Shri Bhanu Pratap Sharma, Secretary Heal & Family Welfare and Dr. Jagdish Prasad, Director General of Heal Services (DGHS) have released inaugural issue of NLEP Newsletter & Leprosy Case Detection Campaign (LCDC) Operational Guidelines on e occasion of Anti Leprosy Day in India Habitat Centre on 30 January, 2016. NLEP Newsletter is a quarterly publication from e house of Central Leprosy Division (CLD) which comprises Lead story / Best practices / Success stories / Highlights / News & events in a well versed informative bulletin. LCDC Operation Guidelines provides general direction to be followed to implement LCDC in identified states by CLD. (Submitted by Consultant (IEC & Training), CLD) Hidden leprosy Case detection in Dibrugarh district, Assam In e high endemic district of Dibrugarh, ere have been negligible numbers of new leprosy cases which is being detected. In e Review Meeting for Medical Officers & NMSs of e District Leprosy Cell, held on 15 & 16 February, 2016 at e State Institute of Heal & Family Welfare, Khanapara, Guwahati, it was decided to detect hidden cases. The members of e District Leprosy Cell, Dibrugarh, namely, Dr. Hema Hazari, Medical Officer, Hemanta Chetia, NMS, Borsha Sarmah, Physioerapist and Rimjhim Bhattacharya, Para Medical Workers have underwent training to detect hidden cases of leprosy and assures more team efforts to fight against leprosy. (Submitted by SLO, Assam) General Heal Camps in Leprosy Colonies of Delhi In continuation of effort to increase accessibility of persons living in leprosy colony to primary heal care services and to solve eir problems facing in treatment of oer general diseases, Neerlands Leprosy Relief Foundation (NLRF) started to organize General Heal Camps in 6 leprosy colonies of four districts (3 Leprosy colonies in West district, 1 in Nor West district, 1 in New Delhi district & 1 in Sou East district ) of Delhi in coordination wi SLO Delhi and CDMOs of districts. These Heal camps are also effective in stigma reduction. Now patients from nearby areas of leprosy colonies are also visiting e camps wiout any hesitation. 5

These Heal camps are also helpful in creating good relationship between persons affected and GHC staff and colony people visit nearby dispensaries wi more confidence. During recent Anti Leprosy Fortnight, ree Heal Camps were organized in ree leprosy colonies (Nav Jyoti Leprosy Association Peeragarhi, Jagat Mata Kusht Asharm, Tilak Nagar and Loke Mata Kusht Ashram, Patel Nagar) of West district on 5, 10 & 12 February, 2016. Total 337 people were benefited from e camps. (Submitted by Consultant NLR, Delhi, Uttarakhand, Rajasan) Commemorating World Leprosy Day- Kushtaroga Vimuktara Kudumba Samellana' 2016 On 14 February 2016, at e Indian Institute of World Culture, Basavangudi, Bangalore, over 200 persons affected by leprosy and persons wi disabilities and eir families gaered to celebrate eir journey of healing which has organized and supported by AIFO India. NEWS AROUND Tackling bo leprosy & stigma by Archana Jyoti Alough India had achieved e target for elimination of leprosy in 2005, e disease has raised its head again due to slackness of Governments and medical auorities. The Modi regime's new rust comes at a right time. From March, e Modi Government will kick-start an intensive fortnightly Leprosy Case Detection Campaign in several phases in 50 high-endemic districts in seven States across e country under e National Leprosy Elimination Programme spanning a mon. The LCDC, prepared by e Union Ministry of Heal, will see Accredited Social Heal Activist (ASHA) workers helped by male heal workers visiting each house in leprosyendemic districts and screen suspected patients and detect early signs of e crippling disease. The programme aims at e treatment of all detected cases in e community which, e Government hopes, will lead to a depletion of e source of infection in society. For more details: http://www.dailypioneer.com/print.php?printfo R=storydetail&story_url_key=tackling-boleprosy-and-stigma&section_url_key=columnists) Mr. Doreiswamy Iyengar wi Dr. Jose (Director AIFO) and AIFO trustee Dr. Nagendra Prasad The event focussed on learning and sharing stories of recovery wi e support of experienced facilitators. Dr. Jose, Director AIFO said at inclusive grow is about ensuring at every individual wheer ey are persons affected by leprosy, persons wi disabilities or anyone who is on e fringes of society has enjoyed a good quality of life. "Early Detection is e key to achieve elimination at all levels" (Submitted by AIFO India) 6

Pranab Mukherjee calls for 'empowering' leprosy victims The President said at ere is a need to empower ose who have been socially discriminated on account of leprosy rough advocacy and information dissemination. President Pranab Mukherjee on Friday called on e nation to make strong efforts to spread awareness about leprosy, its treatment, care and rehabilitation of its patients. The Anti Leprosy Day on January 30 is to coincide wi e martyrdom day of Mahatma Gandhi. Asserting at over e years, e scourge of leprosy has remained a blot on humanity, e President said at Mahatma Gandhi's love and compassion for patients suffering from leprosy is well known. He understood e social dimensions of is disease and worked relentlessly to reintegrate patients of leprosy into e social mainstream. His efforts to eliminate e social ostracism accorded to people afflicted by leprosy went a long way in spreading awareness about e disease. For more details http://www.india.com/news/india/pranab- mukherjee-calls-for-empowering-leprosy-victims- 901562/). EVENTS / MEETING LCDC Brain Storming meeting in CLTRI, Chennai The Leprosy Case Detection C a m p a i g n ( L C D C ) B r a i n storming meeting of states was held 2016 in Auditorium of Central Leprosy Training and Research Institute (CLTRI), Chengalpattu on 13 and 14 January, 2016 to finalise e guidelines for LCDC. More an 50 participants were present in e meeting. DDG (L) has shared his views on Why Leprosy Case Detection Campaign (LCDC) in high endemic districts is needed, in India, The presentation by SLO (UP) on Status of NLEP in State, Consultant (PH) on guidelines for Leprosy Case Detection Campaign (LCDC) in high endemic districts in India followed by group exercise to finalise guidelines. In order to detect hidden leprosy cases, a unique initiative of its kind under NLEP, is plan to be implemented in high endemic districts of e country, in line wi Pulse Polio Campaign by Central Leprosy Division. The first LCDC will be conducted in 50 districts of 7 States namely, Bihar, Chhattisgarh, Jharkhand, Madhya Pradesh, Maharashtra, Odisha and Uttar Pradesh. (Submitted by Consultant (PH), CLD) 7

Anti Leprosy Day, 2016 The Anti Leprosy Day, 2016 wi e eme of To Free India of Leprosy was celebrated in collaboration wi SILF (Sasakawa India Leprosy Foundation) was held on 30 January, 2016 in India Habitat Centre. The 30 January is commemorated as Anti Leprosy Day which is e Martyrdom day of e faer of e Nation, Mahatma Gandhi. The dignitaries to grace e occasion were Mr Dinesh Trivedi, MP & Convenor Forum of Parliamentarians to Free India of Leprosy, Sh. Bhanu Pratap Sharma, Secretary Heal & Family Welfare, Dr. Jagdish Prasad, Director General of Heal Services, Sh. C.K. Dr. Jagdish Prasad, DGHS on Anti leprosy Day in IHC, Delhi Mishra, Additional Secretary, Sh. Sunil Sharma, Joint Secretary, DDG(L), MOH&FW and Ms. Vineeta Shankar, Director SILF. There were around 200 participants comprising Person Affected Leprosy (PAL), NLR, MOH&FW, SILF had actively attended e ceremony. Dignitaries had appreciated and shared eir views at one should love, respect & dedicate efforts to bring leprosy affected person in to main stream society. The Symposium on Need of Hour - Early Detection of All Leprosy Cases was also held wherein Dr. Erwin Cooreman, Team leader Global Leprosy Programme, WHO, Regional Office, Dr. H.K. Kar, Professor, Deptt. Of Dermatology, Hindu Rao Hospital, Dr. S.N. Bhattacharya, HOD & Professor, Deptt. Of Dermatology & STD, U.C.M.S & G.T.B. Hospital and Dr. M.A. Arif, Country Representative, NLR India has made presentations. (Submitted by Consultant (IEC & Training), CLD) Mid Term Review of LPEP project DNH at Diu on 9 February 2016 The Mid Term Review (MTR) meeting of LPEP project DNH at Diu was planned and held at Diu on 9 February 2016 wi participation of various stakeholders. Dr Anil Kumar, DDG (L) inaugurated e meeting by lighting e lamp. During inaugural session, Dr Liesbe Mieras said at implementation of LPEP project in DNH is unique in its quality and implemented in a planned & structured way. Its results will be added in international studies, is may be seen as historical intervention and e hope is at it will make an important impact on leprosy control in future. Dr. Arif said at is project should not be for e sake of research only but results should be utilized to roll out e LPEP in oer areas of e country. DDG (L) presented e trend of leprosy in India during last 15 years. He told about salient points of 12 Five year plan of NLEP, to deal wi rise in disability among new cases and oer epidemiological situation like stagnation of NCDR. He described Leprosy Case Detection Campaign (LCDC) which is going to start in 50 districts during coming mon. Active discussions took place during each session, mainly to clarify e information presented. Main suggestions were work towards handing over e project to e routine leprosy control programme in e coming year. (Submitted by Country Director NLR & ILEP Coordinator) 8

Meeting on NHM West Zone NHM review for Western states namely MP, Maharashtra, Gujarat, Goa and Rajasan was held in Ahmedabad on 11 & 12 February, 2016 wherein Dr. Reetika Malik, Consultant Programme Monitoring had made a presentation on status of NLEP, state specific issues and way forward. Update on Leprosy Case Detection Campaign 2015-16 Anti Leprosy Fortnight 2016 Celebrations in Central Leprosy Teaching and Research Institute (Submitted by Consultant (PM), CLD) To identity hidden leprosy cases, a unique initiative of its kind under NLEP, is being implemented in high endemic districts of e country, in line wi Pulse Polio Campaign by Central Leprosy Division. The first LCDC is conducted in 50 districts of 7 States namely, Bihar, Chhattisgarh, Jharkhand, Madhya Pradesh, Maharashtra, Odisha and Uttar Pradesh. As per e LCDC guidelines, Bihar has organized state level workshop on 26 & 27 February & LCDC has carried out from 28 March to 10 April, 2016. Jharkhand LCDC has also be carried out from 28 March to 10 April. Chhattisgarh has st organized state level workshop on 29 February & 1 March and LCDC has carried out from 14 to 28 March, 2016. Maharashtra has organized state level workshop on 5 & 6 February, 2016 & LCDC has carried from 15 to 30 March, 2016. Odisha has also organized state level workshop from 15 to 18 Feb, st 2016 & LCDC has carried from 8 to 21 March, 2016. Uttar Pradesh has also organized ree regional nd levels meeting at state from 2 to 8 March, 2016 and LCDC has carried out from 16 to 29 March, 2016. Lastly, Madhya Pradesh has run LCDC from 8 March, 2016. Dr. M.K. Showka Ali, Director, CLTRI inaugurated Sports activities for Leprosy Cured Persons in a grant function conducted in CLTRI campus in February, 2016 wherein 200 Persons from Wards, Blocks and adjacent LAP Colonies participated. Apart from it, Cultural programmes were also conducted in e CLTRI lawns. (Submitted by National Consultant (PH), CLD). In his Welcome address, Director, CLTRI praised e guests not only for eir involvement in NLEP activities but also for eir collaborative efforts wi CLTRI in serving e LAPs. He also praised e DDG (L) for his desire to serve Leprosy and his call for all NLEP stakeholders to conduct e Anti Leprosy Fortnight. (Submitted by Director, CLTRI) 9

SPOTLIGHT / PHOTO GALLERY Awareness camps by school students' on Anti Leprosy Day fortnight observance in Kerala State level Meeting in RLTRI, Raipur. Mobile vehicle in Anti Leprosy Fortnight in WB ASHA marking house during LCDC in Odisha Editorial Board Editor-in-Chief: Dr. Jagdish Prasad Editorial Adviser: Dr. B.D. Aani Executive Editor: Dr. Anil Kumar Editorial Board: Dr. M.K. Showka Ali, Dr. M. A. Arif, Dr. A.K. Puri, Dr. Vivek Giri, Dr. S.V. Gitte, Dr. Rupali Roy Technical Support: Dr. B.N. Barkakaty, Dr. Reetika Malik, Ms. Deepika Karotia Design and Layout: Mr. Avnesh Sharma Editorial Coordinator: Ms. Neha Pandey Online version of NLEP Newsletter is available on www.nlep.nic.in Address 550 A Central Leprosy Division (CLD), Directorate General of Heal Services, Ministry of Heal & Family Welfare (Govt. Of India), Nirman Bhawan. Printing supported by ILEP in India 10