LEPRA SOCIETY

ANNUAL REPORT 2014 - 15

Equitable access to health

and improved well being

of marginalised

communities

Vision

Restore health, hope and dignity to people

affected by leprosy

and other diseases linked to poverty,

discrimination & disability

mission

ContentsPreface 05

Leprosy 06

Tuberculosis 08

HIV/AIDS 10

Malaria 12

Lymphatic Filariasis 13

Eye-Care 14

Blue Peter Public Health Research Centre 16

New Initiatives 18

Event 20

Audit Statement 22

List of MC Members 27

Salary Structure 27

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LEPRA Society is a premier non-government organisation working in leprosy since 1989. Headquartered in Secunderabad, LEPRA Society’s projects are spread across the states of Andhra Pradesh, Assam, Bihar, Delhi, Jharkhand, Madhya Pradesh, Odisha and Telangana. With its primary focus on leprosy, LEPRA also initiated interventions in HIV, tuberculosis, vector-borne diseases like malaria, lymphatic filariasis and kala-azar besides eye-care over the years.

The Blue Peter Public Health and Research Centre, located at Cherlapally, is the research wing of LEPRA Society, which undertakes clinical, laboratory and public health research and outreach work across Andhra Pradesh and Telangana.

With new paradigms in healthcare and providing remedies in remote areas to the poor, marginalised and those unable to access healthcare facilities, the organisation has helped people affected with neglected diseases to deal with them. It has also tackled the associated social exclusion, stigma and ostracism effectively to lead better and dignified lives. By breaking the myths and misconceptions of the diseases through a powerful well-packaged information, education and communication system, LEPRA Society has been able to assimilate and integrate those infected with these diseases into the mainstream of society.

LEPRA’s fortè has been its service delivery – right from early identification, diagnosis, treatment

to cure. It has pioneered the concept of the Referral Centre (RC) or Referral Unit which offers specialised services for people with leprosy. With a range of holistic services from actual treatment which includes medication, aids and appliances, prevention of disabilities, surgery, physiotherapy and even counselling, the referral centres are like one-stop places.

The persons LEPRA works with are handled with a humane and empathetic touch. The welfare of the person is of utmost importance. At times the organisation also goes beyond and ensures their socio-economic rehabilitation aspect by facilitating loans to set up small-scale businesses, getting them old-age pensions, disability pensions, and enabling education of infected and affected children as well, since many of them are from the lower economic strata.

LEPRA Society is an affiliate of the global Lepra family and member of the ILEP (International Federation of Anti-Leprosy Associations).

Preface

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Leprosy continues to be the core work of the organisation. India carries half the global leprosy burden and a case is diagnosed every five minutes. Besides providing treatment and care in its 26 Referral Centres located in different parts of the country, LEPRA Society is actively involved in advocacy efforts.

The Referral Centres (in government, non-government set-ups and in LEPRA premises) are located in Andhra Pradesh (Vijayawada, Tirupati, Vizianagaram), Bihar (Munger, Patna), Delhi, Jharkhand (Dhanbad), Madhya Pradesh (Indore, Sanawad, Jabalpur), Odisha (Angul, Berhampur, Bhadrak, Cuttack, Jharsuguda, Bargarh, Dhenkanal, Baripada, Bolangir, Sonepur, Nabarangpur, Koraput) and Telangana (Nallakunta, Dhoolpet and Cherlapally in Hyderabad and at Nirmal in Adilabad). While regular treatment, management of reactions arising due to Multi-Drug Therapy (MDT), management of ulcers/complications, aids and appliances, provision of Micro Cellular Rubber (MCR) footwear and physiotherapy is provided at the RC, the Reconstructive Surgeries (RCS) are conducted in private/government facilities in the respective places. The St Joseph’s Leprosy Centre (SJLC) a NGO located at Sanawad, Khargone district, Madhya Pradesh, has been instrumental in performing more than 1000 reconstructive surgeries. The eye component is a prominent feature in the Referral Centres and surgeries are referred to the hospitals.

LEPRA Society has been taking up the rights of the people affected by leprosy particularly on the issues of stigma, discrimination and rights. It has been

active on the social front integrating the diseased with their families/communities and in the societal mainstream. LEPRA Society works in partnership with forums and community-based organisations such as the Association of People Affected by Leprosy (APAL), Society for Leprosy Affected People (SLAP-Andhra Pradesh), SLAP-Telangana, APAL in Odisha, Sam Utthan in Bihar and Sahyog Kusth Nivaran Sangh in MP to support existing advocacy activities. It provides technical support, capacitating and helping to link these organisations to state administrations to access social welfare schemes.

Leprosy

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Restored functional ability through RCS

Total 593

Children 61 10%

Women 108 18%

Men 424 72%

Total 9759

Children 152 1%

Women 3279 34%

Men 6328 65%

Protective footwear supplied to the beneficiaries (GI and GII)

S No Leprosy Indicators Men Women Children Total

1 New cases confirmed and persons affected accessed services at the Referral Centre 2339 1177 330 3846

2 Cases with disabilities (GI and GII ) among new cases 231 80 9 320

3 People benefitted through self-care camps 1306 1010 192 2508

4 PoD services provided to the disability cases through DPMR clinics 4321 2689 161 7171

5 Prevention from disabilities or worsening of their existing disabilities (ulcers healed) 812 389 10 1211

Tuberculosis (TB) still looms large and claims many thousands of lives, especially in the developing world. In India, a death occurs every three minutes due to TB, which can be easily prevented with timely diagnosis and cure. LEPRA provides treatment services to TB patients. As in leprosy, in TB too LEPRA Society plays a significant role in advocacy, communication and social mobilisation besides support to the RNTCP in MDR TB, diagnosis, capacity building, implementation of 14 Designated Microscopy Centres. LEPRA implements Axshya India Phase II TB project supported by the Global

Tuberculosis

Fund together with 16 partner NGOs covering 22 districts of Madhya Pradesh and Odisha States.

LEPRA Society is active in advocacy being a member of the NGO TB consortium. Through this, LEPRA Society works with national partners in voicing civil society response towards health, particularly TB, involvement of civil society organisations and participation of persons affected by TB in health programmes and in advocacy initiatives. The National TB Consortium has widened its scope of activities, and is now known as the National Health Consortium.

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S No Tuberculosis Indicators Men Women Children Total

1 Sputum positive cases diagnosed for TB 5204 2701 137 8042

2 Cases put on DOTS 1906 1074 120 3100

3 Persons registered first time for TB 4756 3024 399 8179

4 Children on INH prophylaxis - - 232 232

TB HIV coinfection cases registered

Total108

Children 3

Women 29

Men 76

LEPRA Society’s HIV programme centres on prevention, control, treatment, care and support with the focus being on the high-risk population through targeted interventions including Injecting Drug Users projects in Odisha and Bihar; six sites with Female Sex workers and Men having Sex with Men, and Prevention of Mother-to-Child Transmission.

Vihaan project is funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM). Alliance India is the Principal Recipient and LEPRA Society is the Sub Recipient for Odisha state. The project is implemented with eight partner NGOs and CBOs covering 10 districts. The goal of this project is to improve the survival and quality of life of People Living with HIV (PLHIV). The purpose is to strengthen care and support services and improve drug adherence for the PLHIV.

Hifazat project is funded by the Emmanuel Health Association, which is the Principal Recipient

HIV/AIDS

and LEPRA Society is the Sub Recipient for Odisha state. The objective of this project is to strengthen the capacity, reach and quality of harm reduction services of six Injecting Drug User’s Targeted Intervention projects.

The three Community-Based Organisations (CBOs) supported by LEPRA in Andhra Pradesh and Telangana, namely Cheyutha, Sreyassu and Maa Samastha ensure clinical, medical, nutritional, educational and legal support to the PLHIVs. They are supported for institutional strengthening and enabling direct implementation of projects. Three CBOs were trained on developing resource mobilisation strategy through International HIV/AIDS Alliance support. These three CBOs are now trying to mobilise their own resources for their activities. Cheyutha has got fixed deposits done for some students in addition to the regular education and other support provided to them. LEPRA Society is a linking organisation with the International HIV/AIDS Alliance.

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Total3830

Children 173 5%

Women 1777 46%

Men 1880 49%

PLHIV cases treated with ART

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S No HIV and AIDS Indicators Men Women Children Total

1 People reached through outreach programmes 16300 20903 1300 38503

2 ANC mothers receiving ART - 40 - 40

3 PLHIV benefitted by care, support and treatment services 2005 1945 189 4139

4 Children diagnosed HIV positive - - 88 88

5 Mother-baby pairs administered Nevirapine - - 72 72

Samdiravedchi (meaning light for all in Gond language) being implemented in Utnoor division, Adilabad district of Telangana, with the financial support from the Sir Dorabji Tata Trust (SDTT) is currently the only project of LEPRA Society focussing on malaria. The Malaria Samadhan Sibirs is being replicated here. The project’s aim is to reduce mortality and morbidity due to malaria and diarrhoea. Its activities include health camps in remote areas, distribution of long-lasting impregnated bed nets to pregnant women, sensitisation, training the stakeholders, medical, para-medical, anganwadi health workers on preventive measures.

Malaria

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S No Malaria - Telangana and Andhra Pradesh Men Women Children Total

1 Fever cases referred for malaria testing (SV and AD) 31433 24963 23115 79511

2 Cases treated for malaria (Samdiravedchi) 125 106 177 408

3 LLIN bed-nets distributed (Samdiravedchi) - - - 900

4 Children with diarrhoea facilitated for treatment - - 2354 2354

LEPRA Society is the first NGO to pioneer an integrated approach for disability care in leprosy and Lymphatic Filariasis (LF) – two of the world’s most Neglected Tropical Diseases. For the last few years LEPRA Society has been tackling LF disabilities through home-based and community-based approaches. The self-care approach propagated by LEPRA Society has been successful in morbidity management. A large number of people have benefitted by the self-care practices which has helped them control the acute attacks and swelling of the limbs. This has thereby helped people to get back to work and improve their economic status, which had otherwise been hampered by the disease. Mass Drug Administration which is necessary in controlling the disease has also been done in Odisha and Bihar.

The LF projects are operational in Puri district in Odisha and Munger district in Bihar. In Krishna, Adilabad and Hyderabad Referral Centres provide LF and leprosy services.

Lymphatic Filariasis

A new project “Restoring Lives of Forgotten People in Bihar” will be launched in April 2015 with the aid of the Big Lottery Fund, UK in Samastipur district as it has the highest LF burden. The project will address issues of people affected by lymphatic filariasis through self-care practices, access to information, linking with government referral services, school health programmes and other such schemes.

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S No Lymphatic Filariasis Indicators Men Women Children Total

1 Lymphatic Filariasis cases line-listed during the year 1755 3154 49 4958

2 People reached through self-care / Morbidity Managements camps 1847 3778 50 5675

3 Protective footwear supplied to the beneficiaries 887 1320 28 2235

4 Hydrocele surgeries facilitated during the year 431 - - 431

LEPRA has forged a pioneering path in eye-care, particularly to treat persons affected with leprosy. The Mahanadi Netra Chikitsalaya or the LEPRA Mahanadi Eye Hospital (LMEH), established in partnership with Sight Savers International, completed a decade of service in eye-care. Initially designed to cater to the eye-care needs of about one million people of Sonepur and Boudh districts, this project gradually extended to other districts and currently covers more than two million people of Sonepur and Boudh districts and few blocks of Bolangir and Bargarh districts in Western Odisha. About 28 per cent of this population belongs to scheduled tribes and scheduled castes.

The project works under four broader strategies such as base hospital service, outreach diagnostic camp, school screening and health education. The services (which cover a broad range from cataract to low

Eye-care

vision) provided at the base hospital are curative in nature and of acceptable standard. The outreach diagnostic camps and health education activities are organised through the community mobilisation approach and different stakeholders at the community level participate in them. School screening programmes are conducted by providing training to teachers, involving them in the process with follow-up support. In addition, LMEH has also undertaken activities such as sensitisation events for the leaders, volunteers, grassroot service providers; and also observing the World Sight Day every year. The institution has earned a good reputation in Western Odisha, emerging as a credible institution in eye-care.

The Referral Centres also have a vision component in them to treat patients who visit with eye problems including lagophthalmos. While the simple cases are attended to in the RC itself some of the complicated ones are referred for treatment /surgery to government/private hospitals.

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S No Eye-care services Men Women Children Total

1 Cases received OPD and other eye-care services 13895 10224 3701 27820

2 Restored vision with cataract surgeries (SJLC and LMEH) 3358 3083 8 6449

3 People reached through outreach activities 5743 3797 290 9830

4 School students screened through school screening camps - - 4136 4136

5 Students with refractive errors identified during school screening camps - - 539 539

Total5573

Children 831 15%

Women 1929 35%

Men 2813 50%

Provision of spectacles and correction of refractive errors

Glaucoma services provided

Total308

Children 32 10%

Women 109 36%

Men 167 54%

The Blue Peter Public Health and Research Centre has three divisions, namely, Clinical, Immunology and Microbiology. The Clinical division serves the patients reporting voluntarily as well as referred from other medical centres for diagnosis and management. The clinic has facilities and expertise to examine the leprosy suspects, establish diagnosis by laboratory investigation and provide the required treatment. The attached Designated Microscopy Centre (DMC) is for the diagnosis and treatment of tuberculosis patients, while Facility Integrated Counselling and Testing Centre (FICTC) is for counselling and testing of HIV suspects. The confirmed HIV patients are referred to ART centre for registration. The clinic provides prophylaxis and supportive treatment for all patients and refers to higher centres when needed. It also conducts outreach activities in its operational area covering about 315,210 people.

The Immunology division is primarily investigating immune mechanisms of the human host to understand the mechanisms of immune-incompetence leading to development of infectious diseases such as leprosy, tuberculosis and HIV-TB co-infection. Further, it would be interesting to know if genes regulating these immune responses also influence the immune responses. These insights may help in the planning of improved or new strategies to prevent and control the infectious diseases. By determining the T cell, immune correlates of protection from infection, the group intends to develop improved vaccines for leprosy and TB.

Blue Peter Public Health Research Centre

The Microbiology division - BPHRC is involved in research and diagnosis activities in the field of leprosy, tuberculosis and lymphatic filariasis. The laboratory is now upgraded with BSL-3 facility. The division is also accredited for Line Probe Assay (LPA) for Culture & DST (CDST) by Central TB Division, Govt. of India. To support this initiative BPHRC has signed annual MoUs with the Government of Telangana, Andhra Pradesh and Sikkim.

During this period, six papers were published, one manuscript accepted, and two scholars were awarded PhD. The BPHRC has been selected to be part of the newly organised Indo-U.S. Vaccine Action Programme (VAP) Initiative on Tuberculosis Research: Regional Prospective Observational Research for Tuberculosis (RePORT-India) Leadership Team in November 2014. It is expected that such research will be of critical importance in a high TB burden country like India.

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S No Cases reported at the Centre during the year

1 Leprosy 1684 (122 new cases)

2 Tuberculosis 1029 (119 new cases)

3 HIV 174

4 Lymphatic Filariasis 11

5 General Ailments 726

Total 3,624

Foot care on wheels

In November 2014, LEPRA Society launched an integrated mobile foot care unit in Bihar as a pilot initiative - a first-of-its kind effort to ensure foot care needs to people suffering disabilities and those living in far flung areas who cannot access such facilities. For people suffering from ulcers and disabilities on account of leprosy or severe swelling caused by lymphatic filariasis, specialised footwear is of utmost importance. Such footwear is customised for patients by the trained shoe technician after careful examination by the physiotherapist. The aim is to improve the quality of life of people affected by leprosy and lymphatic filariasis by improving mobility and reducing risk of amputation. Pavers Shoe Company in England is to shortly fund a mobile van to help people in difficult-to-reach areas, especially those suffering from leprosy and lymphatic filariasis to access footwear easily.

This mobile foot care unit is an initiative of LEPRA and Sam Utthan (the Bihar State forum of people disabled by leprosy). LEPRA has designed and implemented the first Mobile Foot-Care unit in Bihar to provide exclusive services in protective footwear to 1500 persons (2 pairs in a year) living in 63 leprosy colonies across districts in Bihar in collaboration with NLEP and ILEP agencies. This is the first innovation in India to deliver protective footwear at the doorsteps along with the services of IEC van.

New Initiatives

Ensuring safe water, hygiene and health

LEPRA Society is implementing Health Care WASH Project – supported by Water Aid. The objective of this Project is to ensure water and sanitation rights of people in health care facilities, building the capacities of Water and Sanitation Committees on Water, Sanitation and Hygiene (WASH) as well as engaging with the government to improve WASH infrastructure in healthcare facilities.

During 2014-15, the planned pre-project activity of Baseline Survey was conducted in the implementation districts of Nizamabad (Telangana

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State) and Vizianagaram (Andhra Pradesh State). As part of this survey, data collection was conducted at all the Primary Health Centres (PHCs), Community Health Centres (CHCs), and Area Hospitals and (AHs) and District Hospitals (DHs) of both the districts. Further, two villages under each PHC were also visited by the field investigators to gauge the community-level institutional infrastructures and household-level awareness on WASH components. The baseline data findings indicated the health staffs’ limited capacities on WASH components, need for adherence to proper bio-disposable waste procedures, focusing on community members knowledge on Village Health Sanitation and Nutrition Committees (VHSNC) etc. Apart from the data collection, awareness activities such as Kalajatha and VHSNC meetings were also conducted.

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Sl No General Health Andhra Pradesh

Men Women Children Total

1 Beneficiaries availed general health services 1372 2442 697 4511

2 Beneficiaries treated for Diabetes and Hypertension 1035 1075 0 2110

The WALK to #BEAT LEPROSY was held on February 1, 2015. Conceptualised as a fund-raising-cum-awareness drive, LEPRA Society has been conducting this walk since 2010. This year the WALK was flagged off by the Honourable Governor of Telangana and Andhra Pradesh, Shri ESL Narasimhan who even walked a few metres with his wife Smt. Vimala Narasimhan. The other celebrities who graced the occasion included Mithali Raj (Indian women’s test cricketer), Pragyan Ojha (Indian Cricketer), Arshad Ayub (Indian cricket team manager for World Cup 2015), Madhura Sridhar Reddy (film producer-director), Manjunadh (film director), Kamal Kamaraju (Actor) and Nikita Narayan (Actress).

LEPRA Society pulled off The WALK to #BEAT LEPROSY in a triumphant way, making everyone including the people affected by leprosy proud of it! This was one step forward towards the aim of #BEAT LEPROSY!

Event

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Audit statement

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Audit statement

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Audit statement

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List of MC MembersManagement Committee

Lt Gen Dr. V.D. Tiwari, Chairman

Dr. (Mrs) V. Rukmini Rao, Vice-Chairman

Dr. Ramani Atkuri, Member

Prof. Radha Mohan, Member

Dr. Dinkar D. Palande, Member

Mr. S. Ramanathan, Member

Dr. Urmila Pingle, Member

Dr. Y.B. Jayanth Kumar, Member

Ms. P.K. Jayashree, Member

Lt. Gen. (Dr.) M.A. Tutakne, Member

Dr. P. Suranjeen Prasad, Member

Mr. Ashim Chowla, Secretary and Treasurer

Awards & RecognitionsLEPRA Society submitted an application in a unique national competition “India NGO Awards 2013/2014.” These awards organised by the Resource Alliance and sponsored by The Rockefeller Foundation and EdelGive Foundation were categorised into Small, Medium and Large. They are bestowed on NGOs showcasing successful models and best practices being adopted. LEPRA Society stood fourth amongst the 400 NGO applications received by the organising committee. It was chosen as one of the top four NGOs under “Large” category and was felicitated in an award function on July 26, 2014, in New Delhi. A case book of India NGO awards 2013/2014 was published, highlighting the achievements of NGO awardees.

Ms Meena Gupta, IAS Retd., who was Chairman, LEPRA Society Management Committee for six years (two terms), completed her tenure on 28 February, 2015.

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Salary Structure

Designation Range

Senior Management Staff Rs. 50,000 - Rs 2,20,000

Middle Management Staff Rs. 35,000 - Rs 65,000

Supervisory level Rs. 10,000 - Rs. 40,000

Junior level Rs 5,000 - Rs 12,000

S.No Positions Gender Total

Men Women

1 Senior Management Staff 7 1 8

2 Middle Management Staff 72 16 88

3 Supervisory Level 111 29 140

4 Junior Level 64 26 90

Total 254 72 326

“I am delighted to be a goodwill Ambassador for LEPRA Society. Leprosy and other neglected diseases like lymphatic filariasis cause some of the most life changing circumstances and disabilities in our country, bound up with cultural issues and dreadful social stigma.

Leprosy is curable, but health education and access to vital services are necessary and valuable part of this fight to change lives. Through my involvement I want to see that the message reaches out to many more people in society and encourage hope and support for people affected.”

R. MadhavanAward winning actor and producer

LEPRA SOCIETY

Plot No. 17, Krishnapuri Colony, West Marredpally, Secunderabad 500 026, Andhra Pradesh, IndiaPhone: +91 (40) 44586060/27807314Email: info@leprahealthinaction.in

www.leprasociety.org www.facebook.com/LEPRAIndia

Your contributions will help us to fight disease, disability and discrimination

Donations made to LEPRA Society are exempted under Sections 80G (50%), 35 AC (100%) and 35 (i)(ii) (175%) of Income Tax Act 1961