LEPROSY

 

LEPRA and Leprosy

 

LEPRA India can trace its genesis to the British Empire Leprosy Relief Association (BELRA, now LEPRA (UK)).  BELRA started leprosy work in India as early as 1924, under the royal patronage of the Viceroy of India.  It was to address both the medical and social needs of leprosy-affected persons.  After independence the Indian Council of BELRA continued leprosy work as Hindu Kusht Nivaran Sangh (HKNS) in India.  In 1989 LEPRA returned to India and formed LEPRA India, and was registered in Andhra Pradesh with its office in Secunderabad.

At the outset, LEPRA India focused specifically on supporting NLEP in Hyderabad.  Leprosy control activities were carried out according to the Survey, Education and Treatment (SET) strategy, in which the prime objective was identifying all patients living in an area, using methods such as mass contact and school surveys, and treating them with MDT.
In the eight-year period from 1988 to 1996, LEPRA made remarkable growth in its leprosy activities, starting with the expansion of MDT reach services and  introduction of prevention of disabilities (POD) services in projects.  This was followed by the establishment of reconstructive surgery (RCS) services, along with the development of a model for community-supported socio-economic rehabilitation (SER).  During this period, 175,000 persons affected by leprosy were treated with MDT, 300 persons with deformities underwent RCS and 500 persons with deformities benefited from SER.  In addition, LEPRA India gained experience of working with government services and learned to develop successful partnership models with state governments.

LEPRA India is currently working in the states of Andhra Pradesh (AP), Orissa, Bihar, Madhya Pradesh (MP) and Jharkhand.  It works in 65 districts in these five states, covering a population of 12 million people.  The AP operations began in 1989 with the launching of the first direct project of LEPRA, in Hyderabad, and gradually moved to other districts of the state.  The Orissa operations started in 1990, and are providing services in remote, inaccessible tribal areas.  Operations in Bihar and MP have started more recently, in 2001 and 2008 respectively. 

In India, the role of NGOs in tackling leprosy is particularly important because of a serious reduction in government capacity post-elimination.  During the later stages of NLEP, in order to achieve greater synergy of resources and reduce the expenditure incurred in maintaining the vertical NLEP structure, India envisaged integrating it into the different tiers of the General Health System (GHS), with the process to be completed by 2004.  It was intended that this would utilize the wider web of GHS for the supposedly sparsely populated leprosy cases.  GHS staff, however, had never owned the NLEP programme, and did not share a common understanding with the erstwhile NLEP staff about how to take the leprosy programme forward.  Moreover, while integration was appropriate for states such as Jammu & Kashmir and Himachal Pradesh, where cases were indeed sparse, it was quite inappropriate to states such as Bihar and Orissa, where incidence remained high.  This again reflected the problem that elimination at the national level did not mean elimination in all states.

The WHO strategy for 2011-15 envisages a chain of referral services at secondary and tertiary centres.  In India, the GHS should refer all complications and difficult cases to expert referral centres, one of which is supposed to be present in every district.  However, these are not yet fully operational.  Specialized care is thus often available only in theory, and in any case many GHS staff do not have the expertise to diagnose leprosy reliably.  The role of NGOs in providing clinical expertise and specialist services, and rebuilding government capacity, is therefore particularly important.
Providing Expert Services
 

To provide the clinical expertise lacking in GHS services, LEPRA India established 21 referral centres in AP, Orissa, MP and Bihar.  These function in collaboration with District Nucleus Teams, District Hospital staff and International Federation of Anti-Leprosy Associations (ILEP) partners.  Patients are referred from primary health centres (PHCs), and community and private health providers.  Centres provide initial diagnosis, slit skin-smear testing, and diagnosis of difficult cases.  Once patients are diagnosed, referral centres provide POD services, including treatment of ulcers, provision of micro-cellular rubber (MCR) footwear, self-care counseling for patients and family members, management of reactions and neuritis (using steroids and physiotherapy), and post-operative follow-ups.  Also, importantly, referral centres work to build the capacity of health care staff, particularly in the GHS.

LEPRA also maintains Technical Resource Units (TRUs) to support NLEP in AP, MP and Orissa.  In the latter state, it also operates a Strengthening Referral System (SRS) as a partnership project between ILEP member organisations and the Government of Orissa for a period of 5 years (2007-2012).  This provides capacity building, support for disability prevention and medical rehabilitation (DPMR), operational research, monitoring & supervision, support to local NGOs, socio-economic rehabilitation (SER) and community participation.  It provides DPMR clinics, RCS and physiotherapy.  These are managed by 10 referral centres at NGO and government hospitals, including 5 LEPRA-supported centres.  LEPRA Society, along with other ILEP agencies, has pioneered the designing and implementing of referral mechanisms in the states where it is coordinating.  The leprosy programmes in the centre and states mostly pin their hopes on LEPRA Society for strengthening the referral system and promoting its replication on a wider scale.
 
Prevention of Disabilities
 

In many ways, the real burden of leprosy is a burden of disability, not disease.  Though MDT cures leprosy, late or incomplete treatment leads to nerve damage.  In Bihar, the disability rate among leprosy patients is as high as 8%.  Thus, activities for POD, including promotion of self care by persons with disabilities, remain important components of LEPRA’s projects.  Physiotherapy services are an area of particular limitation for the GHS.  As described above, referral centres provide treatment of ulcers and management of reactions and neuritis.

POD camps are organized at PHCs to demonstrate self-care and complication management to patients and their family members.  Self-care kits are also provided during the camps.  In AP in 2009, 27 DPMR camps were organized, treatment and self-care counselling was provided to 7,276 cases, and family members were educated about self-care and given self-care kits.
Almost all projects include well-equipped shoe manufacturing units producing protective MCR footwear.  By the end of 2009, 84,915 pairs of footwear, including 22,049 pairs for Grade I disability and 32,623 pairs for Grade II had been provided to 37,346 males and 17,326 females.  The referral centre at Munger is the only one in Bihar providing MCR footwear and exclusive podiatric appliances.