LEPROSY
Since its inception in 1975, the Foundation has been conducting basic biomedical and translational research in leprosy. The initial work involved
- Identification of the mechanism of nerve damage
- Identification of pathways of immunological unresponsiveness
- Cultivation of M.leprae
The knowledge obtained was applied to:
- Prevention and treatment of deformities in leprosy
- Development of screening assays for conventional and potential anti-leprosy drugs.
- Critiquing and developing, preventive (vaccines) and immunotherapeutic approaches to leprosy treatment and devising of immunodiagnostic tests.
Video: Beyond Cure: Issues of leprosy affected people with chronic disabilities
It’s worth mentioning that FMR has been a pioneer in the study of nerve damage and ensuing deformities in leprosy, with the largest number of publications in peer-reviewed journals. The research projects were usually driven by issues of current relevance taking advantage of the leads obtained from earlier studies.
Since 2008 there was a perceptible shift from experimental work to field-based studies. Since then, studies have been directed to estimating true prevalence of leprosy, post release from treatment events, the status of stigma and approaches towards reducing nerve damage and deformities.
India continues to carry the major burden of leprosy patients despite the declaration of leprosy elimination in 2005. The incidence or new case detection rate (NCDR) was noted to increase in some pockets, with alarmingly large number of child cases (~35%), suggesting continued transmission and an increase in the proportion of multibacillary cases and grade 2 deformities additionally suggesting a delay in diagnosis. More over relapse and resistance of M. leprae to rifampicin, dapsone (DDS) and ofloxacin, detected through the molecular methods were some of the noted emerging problems. Studies conducted by FMR in the post-elimination period highlighted these issues and questioned the government’s claim of leprosy elimination in India.
Leprosy studies have been temporarily discontinued since 2019.
Some key highlights of our research in this area are
- Unique body of work on the mechanisms of nerve damage that transformed understanding of disease pathology
- First demonstration of growth and multiplication of M. leprae in nerve tissue culture
- Studies have been instrumental in questioning the government’s claim/ and rethinking leprosy elimination in India.
- Mapped the patterns of leprosy strains and disease manifestation, including children with new infections
- Tracked and highlighted the issue of drug resistance in relapsed and new leprosy cases in Maharashtra
- Conducted studies to address and document issues of post-treatment deformity in leprosy patients and developing a comprehensive patient care model for leprosy patients
PROJECTS
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Principal Investigator
Dr. Vanaja Shetty
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Co-investigators
Dr. Nerges Mistry
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Duration
October- December 2019
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Budget
INR 1.68 lakhs
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Funded By
Vasant J. Sheth Memorial Foundation
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Status
Completed
ABOUT THE PROJECT
This project aimed to carry out visual documentation of leprosy patients with chronic disabilities to capture their experiences on help-seeking for Deformity Prevention, Medical care and Rehabilitation (DPMR) services under the National Leprosy Control Programme (NLEP) and their views on improving the quality of services. The content of the photo documentation was derived from the situational analysis project carried out in the Koli Community, Panvel taluka video link : https://youtu.be/a7k1rUrYj8o.
KEY FINDINGS/ACHIEVEMENTS
- Following methodology planning and preliminary data collection, a total of 8-10 consenting patients with deformities involving different parts of body viz. foot, hands, eye and with multiple deformities (2 patients each) were photographed and their experiences and views concerning medical service availability were recorded using a voice recorder at their home base.
- A video clip of ~15 minutes, suitable for Youtube/conference presentation, has been prepared to be used for advocacy purposes. The outcomes would help in knowing the shortfalls in the provision of DPMR services as well as in further designing a larger situational analysis study that aims to focus on the magnitude of chronic disabilities and other co-morbidities in leprosy in other states of India.
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Principal Investigator
Dr. Vanaja Shetty
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Collaborator
Mr. Uday Thakar, Kusthrog Nivaran Samiti, (KNS), Panvel
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Project Team
Dr. Ketki Shah, Mr. Ramchandra Chile, Dr. Shubhada Pandya (Visiting physician) (FMR); Mr. Dyaneshwar Kholgade, Mrs. Kamal (KNS); Dr. Vivek Pai (Bombay Leprosy Project); Dr. Satish Mishra (Bhabha Atomic Research Centre Hospital); Dr. Stanley Kingsley (ALERT-India); Mr. Kader, Ms. Kulsum (Lotus College of Optometry)
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Funded by
Vasant J. Sheth Memorial Foundation
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Duration
September – December 2017
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Budget
INR 3.3 lakhs
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Status
Completed
ABOUT THE PROJECT
The objective of the project was to examine patients who weree on treatment or have been removed from treatment for leprosy for residual neuropathy and to identify existing comorbidities such as diabetes, hypertension and TB among the leprosy patients. Data was collected from the 76 people affected with leprosy residing in villages under Apta PHC, Panvel (Raigad District).
KEY FINDINGS/ACHIEVEMENTS
- The 76 patients released from therapy (RFT) included, 39 males and 37 females between 21-65 years. Thirty-eight percent were seen with grade 2 and/or grade 1 deformity. Neglected foot ulcers were the most common afficition (12), followed by ulnar claw (8), median claw (5) foot drop (4) and lagophthalmos (3). Over 35% had comorbidities such as hypertension, diabetes and lymphatic filariasis.
- It was observed that none were keen on availing of the DPMR services for various reasons, viz. lack of financial resources, poor and fragmented services, poor transport connectivity and long distances. The level of neglect resulting in poor quality of life was unacceptably high. A comprehensive patient friendly approach is the need of the day for care of patients after achieving MDT “cure”.
- Data obtained could help prepare a blue print for designing a need-based disability care service requirements of the community. This would further help in designing a larger study to assess the need for the prevention of disabilities and medical rehabilitation services.
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Principal Investigator
Dr. Nerges Mistry
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Co-Investigators
Dr. Vanaja Shetty, Dr. Ashish Khodke,
Mr. Uday Thakker, Kushtha Nivaran Sangh, KNS, Panvel -
Project Team
Dr. Shubhda Pandya, Ms. Itisha Vasishta, Ms. Swaran Kamble, Mr. Ramchandra Chile; (FMR) Mr. Dnyaneshwar Kholgade (KNS)
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Funded by
Vasant J. Sheth Memorial Foundation
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Duration
February – May 2016
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Budget
INR 1.5 lakhs
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Status
Completed
ABOUT THE PROJECT
Maharashtra sees the third highest number of leprosy cases in the country with a high number of child cases indicating active transmission and an increase in the number of cases with multibacillary and grade 2 deformity indicating a delay in diagnosis. Early detection, timely and regular treatment are the key to breaking the transmission cycle as well as reducing the disease burden. The burden may be from nerve function impairments, visible deformity leading to stigma and discrimination in leprosy High prevalence of infectious diseases like leprosy, TB, malaria, etc. is known among the tribal population. Kolis are one of the largest notified tribal groups of Maharashtra. There is a common tendency to underreport their illness, and the rate of utilization of public health services is also known to be low. Reasons could be poor awareness, nature of work, stigma or their combinations. It was found that some of the fishermen living in coastal villages of Panvel taluka remained as long as 4-5 months on the sea for their work and generally returned home during the rainy season or on week-ends, thus bypassing approaches for survey/examination/treatment. An earlier special survey conducted between 1995-1997 among the underserved, mobile population groups in Panvel taluka revealed that the prevalence of leprosy among fishermen was higher compared to other underserved groups such as construction workers.
In this study, an active house to house survey was undertaken to assess the current leprosy scenario and hidden leprosy cases in one of the villages, viz. Kilavane in Panvel taluka, dominated by the Koli community people.
KEY FINDINGS/ACHIEVEMENTS
- New case detection and leprosy prevalence rates were found to be high in the community; higher than the national average.
- No child leprosy cases were recorded and new cases detected in 2014-15 had no deformity at the onset.
- Of a total of 27 surviving elderly treated (treated leprosy cases among the 1785 enumerated),; 60% had grade 2 deformity and required prevention of deformity care.
- Despite knowledge of leprosy, a high level of stigma was attached and people were reluctant to avail medical services.
CONFERENCE PRESENTATION
Shetty, V. Unmet needs of leprosy patients with disabilities-Finding in Koli community dominated area in Maharashtra, India. 20th International Leprosy Congress on “Current challenges with ambition and realism”, organized by International Leprosy Association, Manila, Philippines, from 11th - 13th September 2019.