- LEPRA in Andhra Pradesh is supporting the Society for Leprosy Affected Persons (SLAP) – the State leprosy forum to take up advocacy initiatives by engaging Media effectively. It addressed the issue of people affected by leprosy with denied rations by the Public Distribution System (PDS) due to the bio-metric issue. This has impacted in getting social benefits among 2150 persons affected with Leprosy in the state of Andhra Pradesh.
- With support from WaterAid under WASH Project (Water, Sanitation and Hygiene) in Vizianagaram, 117 water sources were restored by the active participation and follow-up of VWSC members; 8252 Individual Household Latrines (IHHL were constructed with the active involvement of Village Water and Sanitation Committees and Gram Panchayats.
- To ensure the increased economic status among the PLHIV Families (People Living with HIV/AIDS families, 6 Children who are supported for Higher Education in Sreyassu are presently employed in the different sectors and leading their families.
- Spandana is a First CBO formed by a group of Lymphatic Filariasis (LF) affected Persons in Krishna District, Andhra Pradesh. Facilitated the Block LF affected Support Groups for representing to the Political Authorities and Government officials regarding their issues in getting Disability Certificates and related services. 12 LF Mandal level support groups with 101 LF affected persons were formed and strengthened. Advocated for getting a self-care Kit worth INR 500 for LF affected Person and it was being taken up and implemented in the state.
- Continuous efforts are made for early detection of new Leprosy cases through Community Awareness cum survey programmes in schools and communities ; sensitization to the frontline health functionaries, Registered Medical Practitioners and identified 383 New Leprosy cases and facilitated for MDT (Multi Drug Therapy)
There are a total of 8 projects in Andhra Pradesh, which are
- LS, NTDRU Andhra Pradesh (Referral Centres in Krishna and Vizianagaram Districts)
- Arogya Darsini
- Mobile Foot Care Unit
- WASH (Water, Sanitation, and Hygiene)
- Ending NTD s through Women led WASH
- CHAHA Project
- Supporting the initiatives of people affected by leprosy to uphold their rights – SLAP in Andhra Pradesh
LS, NTDRU Andhra Pradesh (Referral Centres in Krishna and Vizianagaram Districts)
The Referral Centres in Vijayawada and Vizianagaram continued to cater to the persons affected by leprosy and lymphatic Filariasis with their specialised services of physio-care, provision of customized footwear, ulcer care, and counselling and health education. Centres are integrated within government health facilities and are envisioned as tertiary centres for cure and care of leprosy. The Centres are supported by Lepra UK.
Sreyassu, is a community based organization providing services for people living with HIV/AIDS and their families since 2006 in Krishna district. The project is supported by IADHO (Indo American Development and Health Organization). For improving the quality of life among people living with HIV, the CBO offers nutrition support, education support, foster care, medical aid and counselling.
Arogya Darsini, The mobile health and Information, Education and Communication (IEC) van is generating awareness in rural, remote areas of Krishna, Guntur districts on communicable and non-communicable diseases. It supports government health awareness programmes like Leprosy Case Detection Campaigns (LCDC), Anti-Leprosy Fortnight and related health observational days.
The Mobile Foot Care Unit, supported by Pavers (UK), has been started in April 2019 and delivers customised, protective footwear to the residents of 48 leprosy colonies in Andhra Pradesh. Two pairs of protective footwear are provided to each person affected by leprosy. The mobile foot care unit also conducts the awareness programmes for promoting self-care among the persons affected with leprosy.
WASH Project is supported by WaterAid – India for improving access to safe drinking water and WASH in 20 selected Gram Panchayats (GP) across four mandals of Vizianagaram district. The project team is working with the communities, mandated Institutions and other concerned functionaries’ to ensure sustainable WASH practices at all the places.
Ending NTDs through Women Led WASH – Accelerating impact in India through women’s self-help groups is a unique collaborative project of American Leprosy Missions (ALM) and LEPRA, with the Public Health Foundation of India, Indian Institute of Public Health- Hyderabad as research partner. The project’s developmental goal was to contribute to ending NTDs among vulnerable and at-risk communities living in 78 villages in harder to reach NTD endemic and WASH poor districts in Andhra Pradesh (Mentada Mandal, Vizianagaram districts) through sustainable women-led WASH initiatives.
CHAHA Project – Supporting Children and Persons affected by leprosy to continue education” in the state of Andhra Pradesh has been implemented in the districts of Krishna, Srikakulam and Vizianagaram from 2018.With an aim to promote education among the children from Leprosy affected Families, the Project was funded by ORACLE
The Society of Leprosy Affected Persons (SLAP), Andhra Pradesh is formed in 2015 after the bifurcation of Telangana and Andhra Pradesh states. SLAP – AP is operationalised in 13 districts of AP which aims to promote and protect the rights of persons affected with leprosy. LEPRA is supporting SLAP to advocate for their rights, promote Inclusion, building capacities for strengthening the leadership. The project is supported by Fontilles.
Number of people impacted through projects in AP
- LS, NTDRU Andhra Pradesh (Referral Centres in Krishna and Vizianagaram Districts) – The referral centres has reached 3105 persons affected with leprosy and 8760 family members. 317 difficult to diagnose cases were confirmed and kept under MDT with the support from government; 986 ulcer cases were managed.
- Sreyassu CBO reached 1256 persons affected with HIV and reduced the death rate from 15% to less than 1% with the intervention in Jagayyapeta Mandal.
- With the mobile health and IEC van intervention, – Arogya Darsini, the project has reached nearly 4,00,000 people with disease specific information on leprosy, LF, HIV, TB, diabetes and Hypertension.
- 84 pairs of footwear were provided through the mobile foot-care unit, supported by PAVERS in a span of one month.
- Ending NTDs through women led WASH project has created a cadre of 90 trained local women from the self-help groups (SHGs) as Community Resource Persons (CRPs) for WASH and NTDs, a critical human resource for change and action. The project built capacities and raised awareness among nearly 19,000 women in 1718 SHGs. 71 village water and sanitation committees were strengthened and sensitised on WASH and NTDs for necessary action. 229 frontline healthcare workers and staff from 4 PHCs and 1 CHC were sensitized on NTDs. The project facilitated construction of 1266 household toilets.
- 84 children from leprosy affected families has been provided with the education support under CHAHA project in the state of Andhra Pradesh.
Along with Bihar, our operations extend to Jharkhand, Uttar Pradesh, and Delhi towards leprosy, lymphatic filariasis, eye-care and tuberculosis.
- Bihar is a highly populated state and its inhabitants are more than 103.8 million (8.1% of the country). If this state was a country, it would be the third poorest in the world as 80% of the people live below the international poverty line of US$1.25 a day.
- India contributes 59% of the global leprosy burden and 40% of the global LF cases. In India, Bihar alone contributes 32% of all LF cases and 15% of all leprosy cases.
- In Bihar, a total of 17154 new leprosy cases are detected between 2018 and 2019.
- 12% of child proportion in the new cases of leprosy shows that the percentage is higher than the national data. 5.5 % disability proportion among the new cases of leprosy shows late detection.
- An analysis of ANCDR states that 31.5% of cases are being detected in Schedule Caste (SC) population. Our reach is being extended for detecting missed out cases in these communities.
- Leprosy and LF diseases cause immobility, impairment, and need constant wound care, dressing and physiotherapy. For the people affected it also results in stigma, social exclusion and reduced income.
- With LEPRA efforts, the government rolled out a plan of action with a provision INR 750 incentive per surgery to encourage and clear the backlog of hydrocele surgeries. The strategy of incentive is being implemented in 38 districts.
- The World Health Organisation estimates that during 2010-2020, the cumulative impact of blindness and visual impairment in India is $162 billion. India has the highest level of blindness in the world with 15 million blind people, cataract being the primary cause.
- Bihar, being one of the poorest Indian states, is the worst hit with 7,00,000 blind and 4.3 million visually impaired people (1,00,000 additional people become blind every year). Prevalence of blindness was reported to be 8% in the age group of more than 50 years as per National blindness survey.
There are a total of 10 projects in Bihar, Jharkhand, Delhi, and Uttar Pradesh, which are
- Restoring the lives of forgotten People (RLFP) – leprosy and LF of 7 blocks in Samastipur district
- Neglected Tropical Diseases Resources Unit (NTDRU) for leprosy and LF in 4 districts
- Referral Centre Munger for Leprosy and LF
- Mobile Foot Care Unit in 38 Districts
- Sarthak (Protective Footwear Production Unit) in 38 Districts
- State Office Patna – leprosy and LF in 9 Districts
- Rural Eye Health Project – eye care in 5 districts
Restoring Lives of Forgotten People project enables 1,20,000 people living in poverty to lead healthier, productive and self-sufficient lives through an integrated and holistic approach of tackling health issues and stigma associated with leprosy and lymphatic filariasis. The project serves 1,16,000 people with lymphatic filariasis and 4,000 people with leprosy in Samastipur district of Bihar.
From 2015 through 2019, the project contributed 92,274 people affected by LF (89,705) and leprosy (2,569) have received treatment, care and support from the project. 62,604 people affected by LF (Grade 1,2, & 3) and 1769 Grade 1, Grade 2 affected with disabilities were trained on the self-care practices.
Improved skills and capacities to public health staff (1350), Rural Medical practitioners (RMPs) 1525 and community-based institutions to suitably address health, social and economic need of affected people 7405 persons with LF and 1051 persons with leprosy are linked with government schemes and entitlements.
Neglected Tropical Diseases Resources Unit (NTDRU) is implemented in four districts – Bhagalpur, Munger, Begusarai and E. Champaran (Raxaul) of Bihar. The main activities of the project are done to increase case identification at an early stage, refer them to the government health institutions for treatment, organizing IPOD camps, capacity building to project stakeholders, ASHA, ANMs, MOs, General Health care Staff, observing National Health Days and IEC.
Similarly, we are extending technical support to the District Heath Society for implementation of National Leprosy Eradication Programme (NLEP) and National Vector Borne Diseases Control Programme (NVBDCP). The resource unit caters services for preventing of disabilities of 12000 beneficiaries.
Referral Centre, Munger provides a wider range of services from diagnosis, counselling, treatment of reactions and ulcers, training in disability management for LF and leprosy, provision of adaptive devices/ protective footwear, follow-up of persons and sensitise the beneficiaries about government schemes and entitlement. The project intends to be a learning centre to improve quality care and enhance the capacities of government/community. The referral centre provides self-care practices and prevents disabilities of 3000 beneficiaries.
Mobile Foot Care Unit – Provision of footwear should be considered as a ‘mandatory measure’ and not as an extra, optional rehabilitation measure. Providing protective footwear is a part of the treatment. The innovation of LEPRA – the “Mobile Foot Care Unit”, the first-of-its-kind in India, is a great success of the team. The foot care unit is supported by Pavers (UK) and delivering 3000 pairs of protective footwear to all disabled cases in 63 leprosy colonies in Bihar. The unit is providing two pairs of protective footwear to each person affected by leprosy in a year. One thousand five hundred persons disabled due to leprosy are living in 63 colonies of 38 districts of Bihar.
Sarthak (Production of Protective footwear unit) has started the supply of protective footwear on request of government order in Bihar, Jharkhand and ILEP. This unit is supporting in providing the footwear to persons affected by leprosy in the NLEP. A total of 13091 pairs protective footwear comprising 11895 pairs footwear supply of Bihar, 1307 Pairs footwear supply of Jharkhand and 1186 pairs footwear supply of Telangana and Andhra Pradesh
Rural Eye Health Project (Netra Vasant) is implemented in Bhagalpur, Munger, Begusarai, Samastipur and Purnea districts of Bihar. It aims to provide eye care services and control avoidable blindness in the mentioned districts. The project also strengthens the health service delivery system by improvising eye care departments in the district hospitals. 2,00,000 beneficiaries are expected to avail and get helped from this project.
Number of people impacted through projects in Bihar
- Restoring Lives of Forgotten People project
- MMDP Centre served 2,130 people affected by LF, for treatment of acute attack/entry points and 401 people with leprosy, for diagnosis and leprosy reaction management.
- A total of 16,445 persons reported a reduction of the swelling in their limbs. 11,583 persons (6,826 women, 4,442 men, 315 children) with LF were treated for acute attacks, of which 84% reported a reduction in the frequency of acute attacks.
- The joint efforts of the Government and project team 5,726 hydrocelectomies were performed in the public and private hospitals of Samastipur District.
- Protective footwear made by the project was provided to 16,995 people – 14,748 with LF and 2,247 with leprosy. It has increased the mobility of 70% of affected people.
- Over four years, a total of 18,787 people with LF have claimed social benefits such as ration card, widow pension, or are linked with livelihood agencies. Simultaneously, 653 persons affected by leprosy linked with Bihar Shatabdi Kusth Kalyan Yojana (BSKKY).
- Neglected Tropical Diseases Resources Unit (NTDRU)
- 10,963 LF cases were registered and demonstrated them self-care practices at the community level. Amongst 76% (8,332) people have reported the reduction of swelling and 81% reported a reduction of reduction in the frequency of acute attacks.
- 218 persons were managed for reactions and neuritis – 147 recovered after treatment and prevented their disability.
- 9,261 protective footwear provided to the affected persons and it supported in increasing their mobility.
- 1,075 persons with hydrocele are mobilised and facilitated hydrocele surgeries in government health facilities.
- Referral Centre, Munger
- Difficult to diagnosis cases – 248 new cases of leprosy are diagnosed at referral centre and put under the Multi Drug Therapy.
- 127 persons are managed with steroid therapy and prevented their disabilities. 365 persons are treated for ulcer and 74% (271) persons have reported for healing of their ulcers.
- 2653 pairs protective footwear provided to the affected persons and among them 663 persons have received the footwear with arthrodesis and prevented in recurrent ulcer as well as increasing of the mobility.
- Mobile Foot Care Unit – More than 2,500 tailor-made protective footwear has manufactured and distributed. 60% of persons have reported the healing of ulcer due to uses of customised footwear.
- Rural Eye Health (Netra Vasant) – 1,47,532 persons found with refractive errors and prescribed spectacles to them. 7,456 cataract surgeries were performed at the five district hospitals and restored normal vision.
LEPRA has three projects –Vihaan and two targeted interventions in HIV/AIDS. It is one of the Sub-Recipients of Vihaan and has been providing Technical Support to 15 Community Support Centres (CSCs) of Odisha and Chhattisgarh. Currently, there are 12 CSCs in Odisha and 3 CSCs in Chhattisgarh. Vihaan Care and Support Centre is a national initiative to provide expanded and holistic care and support services for People Living with HIV (PLHIV).
“Vihaan”, (meaning dawn’s first light) symbolises a ray of hope in the lives of PLHIV. Implemented through CSCs, it expands access to essential services, supports treatment adherence, reduces stigma and discrimination, and improves the quality of life of PLHIV across India. The goal of Vihaan is to improve the survival and quality of life of PLHIV. LEPRA is providing technical support for implementation of Vihaan through its 15 partners across two states – Odisha and Chhattisgarh. On the programme front, TB referral and testing has been focussed and reiterated compulsorily for coverage of 100% client coverage, since it is the most common co-infection found among the PLHIVs. Tracking of cases under “Mission SAMPARK” has also been a major activity of Vihaan.
West Delhi Referral Centre – Providing patients with protective MCR footwear affected with leprosy and aids, appliances to provide better bio-mechanic solutions to deformities formed due to leprosy in the upper and lower limbs. Self-care techniques are taught to the patients and it is made sure that patients follow the procedure on every visit. Use of physiotherapy modalities to treat deformities such as claw hand and foot drop to attain maximum utility of the affected limb, we also provide general physiotherapy care to patients for orthopaedic conditions such as periarthritis, osteoarthritis, etc. Counselling patients to rehabilitate at their workplace and accommodate lifestyle changes to achieve their potential in life. We also provide diagnosis and complication management, patient contact and school surveys along with regular outreach programs.
Number of people impacted
2,941 people benefitted from West Delhi Referral Centre in the year 2018-2019 alone. Through various surveys conducted and rallies attended we have been able to reach out and educate about three thousand people. Protective footwear – 2,476 pairs customized footwear provided to leprosy affected persons and 5,357 pairs of the protective footwear were provided on request of State Govt. of Jharkhand.
Sparsh Referral Centre
LEPRA and TATA Steel Rural Development Society (TSRDS) jointly initiated the SPARSH project in 2009 in Dhanbad district with an overall objective to improve the quality of life of people with disabilities caused by leprosy and lymphatic filariasis. Around 2,700 people are availing the specialised services, with a goal to enhance early case detection among children, women and men addressing issues of poverty, stigma and discrimination.
Tata Steel dedicated a reconstructive surgery unit at Jamadoba consisting of a 10-bed hospital for people affected by leprosy across the State of Jharkhand. This reconstructive surgery unit was inaugurated by Ruchi Narendran on May 24, in the presence of Sudha Srivastav, Dist. Leprosy Officer, Mita Singhal, Ms. Sailaja Sundararamam, Rakhi Banerjee, Nupur Das, Jasbir Kaur, Tanya Banerjee and Dr A Rohatgi, Chief Medical Officer. It provides free treatment to those who have been disabled by leprosy.
This reconstructive surgery initiative,which is one-of-its-kind in Eastern India, will play a major role in the leprosy eradication programmes, benefitting the patients from the States of Jharkhand and Bihar.
Number of people impacted
62 Reconstructive Surgery (RCS) has been performed at Sparsh, Dhanbad. They have recovered functional ability, good appearance and reinforced the reduction of social stigma. Aids and Appliances – 147 persons have received wheelchair (33), tricycle (46) and crutches (68) rehabilitated at the community level.
- Only ILEP partner organisation working in the state and providing technical support to State Leprosy Eradication program in all 52 Districts and covering more than 8 million population.
- Providing quality leprosy services through two referral centres St. Joseph Leprosy Centre (SJLC), Sanawad and Referral Centre, Sendhwa covering 8 high endemic districts of Madhya Pradesh.
- Covering almost 60% (average 80-100 per year) of state reconstructive surgery target by St. Joseph Leprosy Centre (SJLC), Sanawad.
- Completed 225 Hydrocele surgeries in Panna district under combined approach SANKALP Project.
- Covering 33 leprosy colonies for deformity/disabilities and distributing MCR footwear every six months.
- Providing educational support to children of leprosy-affected families to continue their education and vocational courses.
- Providing training to the RBSK team of districts for early detection of leprosy among children.
- Providing support to the MP State AIDS control program in HIV testing of approx. 2.4 million ANC clients in all 52 districts and also ensuring linkage of all positive pregnant women in care cascade for vertical transmission.
- Working with approx. 300 qualified private providers under the JEET project in Indore and Bhopal to notify all TB cases and providing adherence counselling to clients of private providers’ TB cases along with outcome reporting.
- Completed first pilot project on Leprosy and mental health by providing psychological assessment and counselling to 553 individuals affected with leprosy and their 1445 family members.
There are a total of 7 projects in Madhya Pradesh, which are
- Technical Resource Unit (TRU) for leprosy in 52 districts
- Referral Centre, Sendhwa for leprosy in 8 districts
- Joseph Leprosy Centre (SJLC) for leprosy in 8 districts
- CHAHA Project for leprosy in 4 districts
- SANKALP Project for leprosy and LF in Panna
- AHANA Project for HIV in 52 districts
- Joint Effort to Eliminate Tuberculosis (JEET) Project in 2 districts
Technical Resource Unit (TRU) – LEPRA established the Technical Resource Unit (TRU) in Madhya Pradesh in 2008 providing one NLEP consultant and one Technical Officer to extend technical support to the state leprosy department for strengthening the District Nucleus Teams (DNT), referral systems and DPMR activities as per the state leprosy control programme plan. The TRU will also offer technical support to government health services under different thematic areas like capacity building, monitoring & supervision, and operational research. The NLEP consultant works in the Health Directorate to monitor on a day-to-day basis the NLEP activities and offers technical assistance to the State Leprosy Officer of the MP Govt.
Referral Centre Sendhwa – Barwani district is very high endemic district for leprosy since last four decades and to restore functional ability of persons affected with leprosy, disability prevention and medical rehabilitation especially tribal populations, LEPRA established referral centre in civil hospital premises of high burden block Sendhwa in 2016. The referral centre provides the following services to persons affected with leprosy in Indore:
- Identification and treatment through Indoor Patients Department (IPD) and OPD services
- Prevention of disability through comprehensive care
- Referral and linkages with other districts of Indore division for treating complicated cases
- Awareness activities in the vicinity of Indore referral centre
- To provide specialised protective footwear
- Physiotherapy and counselling
- Ulcer care and treatment
- Linkages and referrals of cases for RCS St. Joseph’s Leprosy Centre, Sanawad
St. Joseph Leprosy Centre (SJLC) is situated in the Khargone district of Madhya Pradesh. The centre was started to eradicate leprosy and provide holistic relief to the patients in accordance with the National Leprosy Eradication Programme (NLEP) guidelines. The SJLC initiated the leprosy control programme covering a population of 2,05,077 across Barwani, Bhikangoan, and Maheswar blocks. In 2005, the project started a surgical unit, fully equipped operation theatre, physiotherapy unit, in-patient ward with 24 beds and shoe unit to provide reconstructive surgery services in seven districts of Indore division.
The aim of the project is improved health and social status of persons affected by leprosy through quality health care services, with the following specific objectives:
- To restore and improve the functional capacities of persons affected by leprosy through reconstructive surgeries
- To address the needs of persons affected by leprosy, affected persons referred from primary health centres, government, community and also provide specialised treatment/services through referral centre
- To generate demand for services and mainstream persons affected by leprosy with the existing government schemes
CHAHA Project – LEPRA is a people-centric organisation and values the contribution made by its beneficiaries. Education support for children is a prioritised support requirement by the served constituency. LEPRA is able to fulfill the demand marginally, due to a lack of resources. The primary purpose of this project is to ensure access for children to pursue their education (formal and remedial) and the immediate well-being and holistic development of children with leprosy. The primary beneficiaries include deserving children who are unable to go school due to poverty, children, and adolescents who discontinued their education and are seeking skill development opportunities as well as those who are unable to pursue their higher education. The project covers 4 leprosy endemic districts of MP.
SANKALP Project is working intensively in the Panna District covering Ajaigarh, Panna, Gunour, Pawai and Shahnagar Blocks (equivalent to 395 Gram Panchayat Villages). These Blocks are co-endemic for LF and leprosy.
In fact, the National Vector Borne Disease Control Programme has identified 11 endemic Districts for LF including Panna. For leprosy, NLEP data shows a very high disability ratio amongst new leprosy cases in Panna District (20.48% Grade 2 Disability). Amongst the total 166 new leprosy cases detected in the district, 53.6% of them were MB cases; the PR was 1.8 and the ANCDR 15%. This indicates a delay in detection mostly due to the absence of active case detection campaigns.
Moreover, the Panna District shares a border with Uttar Pradesh in the North, and discussions at the state and district level indicate that LF cases are concentrated at the interstate border. Working in Ajaigarh will therefore be key.
Historically, Panna has always been identified as a highly endemic district for LF. In the past, the Panna Filaria Unit was a State training centre and all the major prevention and control activities of the neighbouring districts were planned and implemented by this unit.
AHANA Project: Mother to Child transmission of HIV is the primary rout of transmission of HIV among children. This transmission is known to occur during the pregnancy, delivery and breast-feeding period with equal frequency. It is estimated that without any intervention the risk of transmission of HIV from infected mother to child is 20% to 45%. Global evidence suggest that by early testing and ARV intervention with pregnant women and new born baby dramatically reduce mother to child transmission of HIV rate less than 5%. Prevention of Parent to Child Transmission programme is to prevent HIV transmission and mitigate the impact of HIV by expanding access to testing, counselling and prevention of parent to child transmission Services, strengthening inter-program linkages, especially HIV and TB collaboration and integrating HIV Services with the general health system.
The objective is to ensure that pregnant women who are diagnosed with HIV would be linked to HIV services for their own health as well as to ensure prevention of HIV transmission to new-born babies under the PPTCT programme.
AHANA Project – Mother to child transmission of HIV is the primary rout of transmission of HIV among children. This transmission is known to occur during the pregnancy, delivery and breast-feeding period with equal frequency. It is estimated that without any intervention, the risk of transmission of HIV from infected mother to child is 20% to 45%. Global evidence suggests that early testing and ARV intervention with pregnant women and newborn babies dramatically reduce mother to child transmission of HIV rate less than 5%. Prevention of parent to child transmission programme is to prevent HIV transmission and mitigate the impact of HIV by expanding access to testing, counselling, and prevention of parent to child transmission services, strengthening inter-program linkages, especially HIV plus TB combination and integrating HIV services with the general health system.
The objective is to ensure that pregnant women who are diagnosed with HIV would be linked to HIV services for their own health as well as to ensure prevention of HIV transmission to new-born babies under the PPTCT programme.
Joint Effort to Eliminate Tuberculosis (JEET) Project – India has the world’s largest burden of tuberculosis (TB). Over the past two decades, India’s Revised National Tuberculosis Control Programme (RNTCP) has made notable progress in reducing TB deaths, through the provision of basic TB services via the public sector. Nonetheless, major challenges remain: healthcare in India is dominated by the private sector, where the majority of patients first seek care. Private healthcare providers often use inaccurate diagnostic tests for TB or omit to test altogether, leading to diagnostic delays while patients cycle between different providers. Even once patients are diagnosed, a general lack of treatment adherence monitoring and support is unfavourable for long-term treatment outcomes.
Moreover, although tuberculosis was made a modifiable disease, there remain major challenges in encouraging private providers to comply with these obligations. For these reasons, India’s recently-announced plan to eliminate TB, private sector engagement forms a key strategic priority.
Number of people impacted through projects in Madhya Pradesh
|Project||Direct beneficiaries||Indirect beneficiaries||Category of Direct beneficiaries||Categories of In direct beneficiaries|
|Technical Resource Unit||5470||47500||Persons affected with leprosy||Spouse, family members, Childrens|
|Referral Centre Sendhwa||705||4230||Persons affected with leprosy||Spouse, family members, Childrens|
|St. Joseph Leprosy Centre||2336||309147||Persons affected with leprosy||Spouse, family members, Childrens, Women groups, SHGs, School children’s|
|CHAHA||142||–||Children’s affected with leprosy||–|
LF – 1115
|53677||Persons with leprosy and LF||Spouse, family, school children’s, PRI members, ASHA,AWW|
|AHANA||536||1408315||Positive pregnant women||ANC clients|
|JEET||4234||–||TB cases||Spouse, family and children|
The function of the state office is to facilitate and extend support to projects and ensure that programmes are implemented in conformity with broad organisational mission and priorities. It ensures that programmes are efficiently and effectively managed. The state office plays a critical role in organisational decentralisation process which is more of a support and coordination unit. The following are the broad roles of the state office:
- Overall coordination and programme management support
- Monitoring & evaluation
- Capacity building and exposure
- Documenting promising practices
- Advocacy and partnership management
There are a total of 7 projects in Odisha, which are
- Technical Resource Unit (TRU) and Strengthening Referral System (SRS) project for leprosy
- Swabhiman project for leprosy
- Vihaan project for HIV
- Mahanadi Netra Chikitsalaya for eye-care
- Junagarh Netra Chikitsalaya for eye-care
- Targeted Interventions for IDU’s for HIV
- Targeted Interventions for FSM’s for HIV
Technical Resource Unit (TRU) and Strengthening Referral System (SRS) – The project covers the entire 30 districts of Odisha (Population – 4,59,80,202) through 6 referral centres in government institutions at strategic district head-quarter locations. The project supports the state in capacity building of medical and para-medical staff, monitoring & supervision, data analysis & feed-back, advisory role to Government in strategy formulation, preparation of IEC materials and reduction of stigma & discrimination. The project aims to provide different kinds of services to 4000 persons; manage 200 new leprosy reaction/neuritis cases, ulcer care for 900 persons. The project facilitated to provide RCS services to 200 persons with permanent deformities and to mainstream them.
Swabhiman Project started on 1st April 2017 covering 3 districts namely Subarnapur, Nabarangpur & Koraput which was a merger of two projects viz. KORALEP & BOLEP. The project manages two inpatient wards – one at Koraput, and the other at Sonepur. The project aims to address both preventive and curative aspects of leprosy which include strengthening Disability Prevention and Medical Rehabilitation (DPMR) clinic, provide disability care at inpatient wards, manage leprosy reactions & neuritis, support reconstructive surgeries, engage in new leprosy case detection, and provide customised footwear to needy persons and so on.
Vihaan Project is being run in 2 states (Odisha and Chhattisgarh) as SR by LEPRA through a partnership with 12 PLHIV Networks and 3 NGOs. The care and support centres have a target of providing care and support to active care cases registered at the ARTCs. The purpose is to expand access to essential services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of people living with HIV (PLHIV). The programme is designed as the care & support component of the country’s HIV response under the National Strategic Plan.
Mahanadi Netra Chikitsalaya – The comprehensive eye care service project popularly known as Mahanadi Netra was started in partnership with Sight Savers International (SSI) in 2003 for the Common Mission of Combating Blindness in Subarnapur and Boudh District of Odisha State. The project covers Sonepur, Boudh, Bargarh and Bolangir districts but its core district is Sonepur and Boudh districts. The total population of both the districts is near about 10 lakhs. The project has programme components such as out-patient Department, inpatient wards, outreach programmes at grassroots locations, school education programme and so on.
Junagarh Netra Chikitsalaya – This project covers several programmes which include the Junagarh Netra Chikitsalaya (JNC), the school eye health programme, capacity Building of grassroots-level health workers including Accredited Social Health Activists (ASHAs), managing eye care at the community level through Vision Centres and so on. The history of JNC dates back to 2009 and other programmes are of recent inclusions. The JNC is a nine-bed hospital and is functioning under the Public-Private Partnership (PPP) model. JNC – LEPRA covered the whole of Kalahandi district.
Targeted Interventions for Injecting Drug Users (IDU’s) – The project started on 1st July 2006 with 350 HRGs in the target population of Injecting Drug Users (IDU’s). The project is covering 789 IDU’s from different hotspots of Dumuduma, Bharatpur, Baramunda, Nayapalli, Unit-4, Unit-6, Unit-9, Unit-3, Chandrashekharpur, Saheed Nagar, Kalingastadium, Laxmisagar, Kalpana, Pallas Palli, Baragada, and Bapuji Nagar in Bhubaneswar city. The project aims to prevent HIV transmission among IDU’s through needle syringe distribution, later refraining them from practicing the same and lead a healthy life.
Targeted Interventions for Female Sex Workers (FSW’s) – The project started in 2006 covering urban slums of Koraput city. The project aims to generate awareness on HIV/AIDS, RTI/STI and to develop self-motivational skills to avail health services at different service delivery points among the high-risk groups such as FSW, migrant labourers, and truckers. Presently, the project covers – Jeypore Municipality, Boriguma Block, Kotpad Block, and Baipariguda Block. This project now works for 484 FSW as against the OSACS target of 400. The project promotes safe sex practices among sex workers to prevent the risk of HIV transmission.
- Influenced the district and state NLEP to include Adilabad district in the second Leprosy Case Detection Campaign 2018 list framed by Govt. of India.
- Continued efforts for early detection by involving local SHG women, ASHAs in slums/villages search activities. Kushnepally village one of the hard to reach areas with a population of 9872, Asifabad district, the project conducted a case detection camp/survey with community engagement for 4 days where19 cases (4 MB, 5 women, 3 children, and 3 G2D) were detected and most of them are farmers.
- The projects promoted self-help groups/forums of lymphatic filariasis for different genders and ages by influencing the local people’s representatives, the health minister, CBOs and local media. The state government has issued monthly pensions (INR 1000 per person) to the LF affected persons.
- The school education programme on leprosy was conducted in 48 schools and reached thousands of students and created awareness about leprosy. 85 students (affected by leprosy) received annual education support from CHAHA project in the region.
- 1590 people affected by leprosy received services like – reactions management, ulcer treatment, footwear and counselling from referral centres.
- The state TRU supported in scrutinising 13 NGO applications for leprosy NGO schemes and submitted reports for approval authority.
- Assisted the LCDC programme in the state and which impacted in the detection of 1360 new leprosy cases in 14 days survey. It helped the involvement of general health care staff in new case detection and treatment. Also, assisted the post LCDC evaluation in Karnataka and Andhra Pradesh states and submitted the recommendations report to NLEP.
- PAVERS Mobile Footwear unit started in the region to provide the MCR footwear to 2000 people affected by leprosy in 23 colonies.
- Organised leprosy walk (1.7 km) on 27th January 2019 world leprosy day in Hyderabad with the stakeholders. NDTRU TS received an appreciation certificate as best NGO from District Leprosy Officer, Hyderabad District.
Blue Peter Public Health and Research Centre (BPHRC)
The State Art centre “Blue Peter Public Health and Research Centre” comprises clinical epidemiology, microbiology, immunology, molecular biology and administrative divisions. The divisions are independent entities with a high focus on microbiology, immunology and a clinic supporting leprosy referral services, TB DOTS services, HIV ICTC Centre. The Centre works with clinical research and services, laboratory research, technical resource centre-leprosy and administration, envisioned to carry out clinical, laboratory services in leprosy and TB, conduct clinical and laboratory research of value for immediate application in the care and control of leprosy and other neglected diseases, closely collaborate with programmes in the field.
There are a total of 5 projects in Telangana, which are
- Neglected Tropical Diseases Resource Unit (NTDRU), Hyderabad for leprosy, TB and lymphatic filariasis (LF)
- Neglected Tropical Diseases Resource Unit (NTDRU), Adilabad for leprosy and LF
- Technical Resource Unit (TRU), Telangana for leprosy
- CHAHA Project
- Mobile Footwear Unit
- Blue Peter Public Health and Research Centre (BPHRC)
Neglected Tropical Diseases Resource Unit (NTDRU), Hyderabad has initiated its work in leprosy, TB and subsequently expanded to other diseases like LF morbidity management under combined approach.
The project has been functioning with two referral centres at Nallakunta in Hyderabad, Mahbubnagar and five TB DMCs in Hyderabad are providing direct delivery services. The project facilitates the advocacy programme besides monitoring in seven Urban Primary Health Centres (UPHC’s) and organising case detection campaigns, morbidity management camps, IEC, awareness and capacity building programmes.
Neglected Tropical Diseases Resource Unit (NTDRU), Adilabad has initiated its work in leprosy and subsequently expanded to other diseases like LF morbidity management under combined approach.
The project has been functioning with two referral centres at Nirmal of the same district and Kagaznagar of Asifabad district providing direct delivery services. The project facilitates the advocacy programme and organizing case detection campaigns, morbidity management camps, IEC, awareness and capacity building programmes.
Technical Resource Unit (TRU), Telangana strengthens the services by implementing planned activities and innovations under National Leprosy Eradication Programme (NLEP) and also assist to improve the quality of leprosy services by field visits in 31 districts of Telangana.
The project identifies the programme needs and facilitates the state in planning the activities, compiling result-based district plans, facilitates the district leprosy societies meeting regularly and improves the coordination. The project supports the local NGOs in the implementation of leprosy schemes and establishing a sustainable referral mechanism. It backs the DPMR camps in established leprosy NGO hospitals with the support of SLO/DLO.
The project supported by ORACLE works for children affected by leprosy in seven leprosy endemic districts (Hyderabad, Mahbubnagar, Nagarkarnul, Wanaparthy, Nirmal, and KB Asifabad).
The project identified the constraints of leprosy like poverty, isolation, fear, stigma & discrimination, children affected by leprosy are deprived of education. The project helps to lower the barriers to education and implemented to continue the children’s school education whose families could not afford the fee and youth continuation of their college education or vocational skill development opportunities.
Mobile Footwear Unit
The main purpose of the mobile footwear unit is to reach out to people with leprosy and LF foot disabilities who cannot access footwear services. It visits 23 leprosy colonies of Telangana state and areas with high LF morbidity.
The unit was launched on 27th January 2019 (world leprosy day) by state leprosy officer and president of APAL (association of people affected by leprosy) in Hyderabad. The colonies are located on the outskirts of the towns/cities and 1038 people affected by leprosy living in colonies. It is also planned to supply footwear to 400 people affected by filariasis (LF) in the Asifabad district by this unit.
Number of people impacted through projects in Telangana
- 3079 people impacted through the NTDRU Hyderabad project
- 3860 people impacted through the NTDRU Adilabad project
- 31 districts were impacted through TRU project
- 105 children infected/affected with leprosy were impacted through the CHAHA project
- 3000 leprosy affected and 400 LF affected people will be given footwear through the mobile footwear unit
Joint Effort to Eliminate Tuberculosis (UP) – The JEET project aims to intensively engage with the private sector to fill the gaps and help the nation in achieving its NSP targets of TB elimination. LEPRA is a sub-recipient of Joint Effort for Elimination of Tuberculosis (JEET) with CHRI. A Patient Provider Support Agency (PPSA) will be set up in four districts (Varanasi, Allahabad, Jaunpur, and Gorakhpur) and would be responsible for the continuous, end-to-end engagement of private sector to provide quality TB services to patients seeking care in private sector. Engagement with private providers with high TB patient load and patients seeking care from them will be supported.
Number of people impacted
5,765 Tuberculosis patients from the private sector and brought them under treatment. More than 2,000 cases were facilitated and added for direct benefit transfer (DBT – 500 cash incentive for nutrition).
LEPRA Society works in strategic partnership Lepra UK. Both the organisations represent the larger part of the global LEPRA family.