Improving quality of leprosy services, integrated self-care projects, strengthening of Disabled People’s Organizations (DPOs) using a right-based approach and the rollout of LPEP were the main areas of focus in 2016.
NLR assists the government with the clinical aspect of leprosy control as well as managerial aspects of the national control program and the development of policies and guidelines.
In 2016 the Rehabilitation Council of India developed a Disability Management Training (DMT) Module for persons with a disability due to leprosy (PWDL) to enhance self-care and disability management, in which they incorporated the SCG Guidelines of NLR India. NLR participated in the committee for development of the DMT module.
NLR was very much involved in the Leprosy Case Detection Campaign (LCDC) initiated by the government of India in March and September 2016. At the request of the government, NLR staff assisted in planning, supervision and evaluation of this LCDC. Through the NLR-lobby and the success of LPEP in Dadra & Nagar Haveli, the government of India issued the operational guidelines for post-exposure prophylaxis in 2016. Implementation of SDR-PEP started in contacts of cases detected during LCDC, thus expanding the implementation of this innovative approach.
Number of new cases detected 127,334*
Proportion of new cases with grade-2 disabilities 4.6%*
Number of new cases detected in the area where we work 26,781*
Number of people receiving leprosy-training 1,796
Number of people informed/educated (awareness raising) about leprosy 305,761
Number of self-care groups supported/formed:
a) Number of existing groups (formed before 2016) supported in 2016 546
b) Number of new groups formed and supported in 2016 17
Number of people disabled by leprosy and other diseases trained in self-care 579
* The reporting year in India is from April 1 2015 till March 31 2016
Number of Disabled Peoples Organizations (DPOs) receiving assistance from NLR 7
Number of people provided with reconstructive surgery 253
Number of people provided with assistive devices (wheelchairs + crutches + sunglasses + protective/ orthopaedic footwear + prostheses) 3,176
Number of people provided with microcredit 1
Number of people receiving financial support for education 1,413
Number of people receiving vocational training 45
Number of direct contacts of new patients given preventive medication SDR (single dose of rifampicin) 9,319
Number of persons with disabilities acquainted with their rights 2,025
Number of people who received leadership training 113
NLR India has been empowering people affected by leprosy and disabilities under the project ‘Unity is Strength’. The project was launched in April 2016 to strengthen the voice of those affected by leprosy and disabilities through establishing and empowering peoples’ institutions in all 11 blocks in Aurangabad district, Bihar and 6 leprosy colonies in Delhi. So far, 15,827 persons with disabilities were assessed for their needs, 155 self-help groups were formed, and from those 571 key people were trained in self-help group operational management (accounting, registration, board formation, etc).
The LPEP project in Dadra & Nagar Haveli (DNH) is progressing well. During 2016, single dose rifampicin (SDR) was given to 9,313 contacts and there was no report of any adverse effect. Thanks to the successful implementation of LPEP in DNH, the Government of India has taken the initiative to roll it out in 163 districts where the Leprosy Case Detection Campaign (LCDC) was implemented. The government adopted the NLR-guidelines for the LPEP-project and operational guidelines for implementation of SDR-PEP were issued to the States.
The Country Director and the NLR Leprosy Program Advisors (LPA) were involved in formulation and revision of the government’s LCDC manual.
During the LCDC, approximately 31,666 new cases were confirmed in the 20 states where the campaign took place. Out of all NLR-supported states (UP, Bihar, Jharkhand, West Bengal, Delhi & Uttarakhand), a total of 6,412 cases (approx. 20%) were detected.
To support LCDC, all NLR Leprosy Program Advisors were actively involved in the formation of working committees at state, district and block level. LPAs supported State Leprosy Officers, District Leprosy Officers & Block Medical Officers in planning, the formation of search teams and training of BMOs and other field staff. NLR staff also supported the monitoring and supervision of search teams, and facilitated daily reporting. LPAs also supported states in final report preparation and submission to the Central Leprosy Division.
People affected by leprosy, people with lymphatic filariasis (LF) and people with diabetes were trained together in self-care in combined groups. Worsening of disabilities could be prevented in about 95% of the cases and 72/168 ulcers healed within 6 months. In these projects, a total of 579 people were trained in self-care, 131 of whom are LF cases, 3 diabetic cases and 445 leprosy cases with disabilities. This so-called “integrated self-care group” intervention is a promising innovation and NLR has been the first organization in India to experiment with this approach. Combining types of disabilities requiring similar foot care was found to be feasible and no stigmatization was observed from other group members towards the persons affected by leprosy. Moreover, the approach is cost efficient, as more persons can be reached with relatively little extra costs.
Education is the most powerful weapon for Rocky & Roger
A story of two talented brothers
NLR supports the brothers Rocky and Roger Raphael by paying for their school fees, uniforms, bicycles and other school supplies like stationery. It has footed these bills for 8 years now. NLR reaching out happened at the right moment in their life and rescued them from giving up on their education and turning to a life of begging.
Both Rocky Raphael and Roger Raphael have lived in the Missionary Colony in Patna since birth. Their parents were affected by leprosy and as a result the family was suffering from all leprosy-related disadvantages such as poverty, discrimination, unemployment, illiteracy, etc. Luckily, the Missionary Hospital, located close to the Missionary Colony, offered their parents a job in agriculture. Rather than being reduced to beggary, they could now earn a little money by working on the land. Eight years ago, their father passed away and the family income decreased significantly. Fortunately, they came in touch with NLR and started getting financial support for their education.
His dream is to become a Cardiologist.
Roger is now in 12th grade and he will take his final exams in March. He has to cycle for 50 minutes to reach the Holy Mission Secondary School. School is from 8.15 to 12.45pm, 6 days a week. His favorite subject is Biology. NLR has been supporting him since 6th grade to make sure he continues his education. Roger is an excellent student with great plans for the future! His dream is to become a cardiologist. When he finishes his exams in March, he plans to take the premedical entrance-test in May. Hopefully he will be able to start medical college in June to make his dreams come true.
His dream is to become Ambassador.
Rocky attends another school than his brother. His is the St. Michael School. To reach his it, he also needs to cycle for 50 minutes. He is now in 11th grade and will take his final exams in a year and a half. His favorite subject is economics and statistics. NLR has been supporting him since 5th grade. Rocky too is an excellent student and, much like his brother, he knows exactly what he wants to do after 12th grade. After graduation he would like to go to university to study social sciences. He hopes to work for the Indian Government as ambassador.
The acceptance of PEP by the Indian government as a new approach for the prevention of leprosy transmission to contacts of persons affected by leprosy was an important milestone for the project, showing that indeed the approach can be adopted by national governments.
Another lesson learned was that self-care by a clustered group of patients facing comparable symptoms proved to be feasible, efficient and cost-effective. A worsening of disabilities can thus be prevented for patients suffering from leprosy as well as those suffering from lymphatic filariasis or diabetes. With relatively little extra financial input we can reach more individuals who are at risk of developing further disabilities.
Unfortunately, local fundraising among the Indian population remained difficult for the local organization, and results fell short of expectation. To get a larger audience in India acquainted with NLR’s work in India, the focus for 2017 will be on institutional fundraising, brand building and visibility.
Regular capacity building support to the government’s leprosy program will continue at state and district level in 7 states. The Stop Transmission (PEP++) project will kick off in Uttar Pradesh state, and will require heavy time investment from the team in 2017. At the same time the PEP rollout in 163 districts will be continued with technical assistance from NLR.
With the encouraging results of integrated self-care in 2016, another 6 similar projects will be launched at 6 new primary health centres, one in each state where NLR works. Building on the success of the Unity is Strength project in Bihar, the approach where self-help groups consisting of persons with various types of disabilities are formed will be started in each state where NLR works in India. The goal is that these self-help groups will develop into strong rights holders’ organizations, capable of claiming the rights and entitlements of persons with disabilities in their local area.