Demise of Dr R Ganapati

Leprosy Mailing List – November 19th, 2011 

Ref.:   Demise of Dr R Ganapati

From: Pranab K Das, UK; J Watson, …

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Dear all,

Dear Dr Pai,

With sadness we have received the news.  Our heartfelt condolence is to be conveyed to his family and friends and most importantly to he committed team.

Professor Pranab K Das

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Dear Friends,

I am so sorry to hear of the death of the wonderful Dr. Ganapati.   His dedication to the cause of helping the leprosy affected has been phenomenal.  His manner was always gracious and patient in the extreme.  The world will be a poorer place without him.   My thoughts and prayers are with those who now mourn him.

Kind Regards,

Jean

Jean Watson OBE, Leprosy Gandhi Award recipient.

Demise of Dr R Ganapati

Leprosy Mailing List – November 19th, 2011 

Ref.:   Demise of Dr R Ganapati

From: H Srinivasan, Chennai, India; G Oehler, Nigeria; R Jerskey, Los Angeles, USA

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Dear all,

The Leprosy World lost an eminent son and I have lost another good friend in the death of Dr R Ganapati, who tirelessly worked for the well- being of the leprosy-afflicted, all his life and almost till his last breath.  Just three weeks ago he, in a mail to me, said he "tries to work as much as his heart allows" him to.  Even his heart, large as it was, could not, I suppose, cope with the workload and had to call it a day at last.

Dr Ganapati's name was synonymous with "Urban leprosy control" and whenever Bombay (now Mumbai) was mentioned in connection with leprosy, it often referred to Dr Ganapati and his work.  He was the father of the well-known Bombay Leprosy Project and in setting that up and running it he showed that good quality leprosy work could be done successfully in the urban metropolitan milieu and how that could be done.  That was not an easy task as anybody with experience in field work would avow.  Before Ganapati, it was thought an almost impossible task, and lo, there was Dr Ganapati and the impossible was shown to be successfully possible, giving a fillip to setting up other urban leprosy control projects.  Unlike many others in the field, his interest was not confined to "making the leprosy patients safe for the community by rendering them 'smear negative'  "; he was interested in their total welfare and in that I feel he served as a model leprosy worker.  His work in Dharavi, reputed to be the largest slum of Asia located in Bombay, is a glorious chapter in the annals of leprosy work in India.  

He was a personal friend of mine and I will always remember his endearing smile and the way he came forward and offered his help to my daughter when she had to spend a year in Bombay as a student.  My heartfelt condolences to Mrs Ganapati and his two daughters and to the staff of Bombay Leprosy Project for their great loss.  In the face of death, we are helpless and can only share their sorrow.

H Srinivasan

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Dear all,

Everyone at GLRA Nigeria was very sorry indeed to receive the news of the passing of Dr. Ganapati.  His tireless work at the Bombay Leprosy Project brought hope and comfort to many, and will remain an inspiration to everyone involved in the fight against leprosy.  The management and staff of GLRA Nigeria wish to convey our heartfelt condolences to colleagues, friends and Ganapati family, while we pray for God to grant his soul perfect peace.

Yours sincerely,

Gerhard Oehler

GLRA Country Representative

on behalf of German Leprosy and TB Relief Association Nigeria

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Greetings from East Godavari Dt., Andhra Pradesh, India, Salvatore, and greetings to all who read the LML....

My wife Vikerunuo ["Aruno"] and I are visiting projects in urban and rural India these weeks and we had the joy and privilege of meeting with Dr. Ramaswamy Ganapati during our sojourn in Mumbai just this past week, including at the Bombay Leprosy Project. 

His warmth, passion for serving those affected by leprosy and encyclopaedic knowledge in the field of leprosy will be greatly missed.  The twinkle in his eyes, his smile, and generosity of sharing from his extensive reservoir of anecdotes and research....undiminished since we first met, when he graciously welcomed me nearly 20 years ago to the day at the conference on "Relapses and Reactions" in Hyderabad.

In Memorium and Gratitude,

Robert Jerskey

LOTR, POD consultant

National Hansen's Disease Program

Los Angeles and San Diego

Recently approved ILEP Leprosy Research strategy

Leprosy Mailing List – November 18th, 2011 

Ref.:   Recently approved ILEP Leprosy Research strategy

From: D Soutar, London, UK

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Dear Salvatore,
I would be grateful if you could post the following news item and link regarding the recently approved ILEP Leprosy Research strategy.  Further research in all aspects of leprosy control will still be needed if we are to have the appropriate, sustainable tools with which to continue towards our goal of a world without leprosy.  I very much hope the sharing of this ambitious ILEP Strategy will stimulate some fresh debate and motivation to address and reverse the declining focus on important leprosy research.  We welcome your readers’ thoughts and responses on this topic.
Regards,
Douglas Soutar

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Ambitious Research Strategy for ILEP Federation     See link: ILEP Research Strategy

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At their meeting in October, 2011 the ILEP Board approved an ambitious Research Strategy for the ILEP Federation.  This had been formulated by the outgoing ILEP Technical Commission and its promotion and follow-up will now be a priority for the new ILEP Technical Commission whose eight members were selected by the ILEP Board during the same meeting.

Summary: A research strategy to develop new tools to prevent leprosy, improve patient care and reduce the consequences of leprosy

The ImportanceThe Global Leprosy Programme has had a dramatic impact on the prevalence of registered cases of leprosy over the last 20 years through the implementation of short course multi-drug therapy (MDT) treatment. However, further advances in the field of leprosy are hindered by the lack of new tools to address the challenge of apparent persistence in transmission and incidence, and the long term consequences of the disease. 

The StrategyThis strategy was developed by the Technical Commission of ILEP to provide a framework to prioritise research, to identify the steps needed to develop and implement new tools, and to identify funding gaps. The strategy focuses on applied research, either technology transfer or research to evaluate effectiveness of interventions where there is already proof of principle.  More basic research and proof of principle are important but are outside the scope of this five-year strategy.

The PrinciplesThe strategy is composed of eight themes but research in these themes should be fully integrated mainly through the use of common field sites.  The integration of research with other Neglected Tropical Diseases and diseases of poverty, and multi-disciplinary approaches are strongly advocated.  Millennium Development Goal (MDG) 6 targets the reduction in the burden of disease but tackling poverty (MDG1), education (MDG2), gender equality (MDG3), child health (MDG4), maternal health (MDG5) and partnerships (MDG8) are all important for leprosy. The key research themes are as follows:

1. Prevention of leprosy
2. Early detection
3. Chemotherapy
4. Nerve function impairment and reactions
5. Prevention of disability
6. Community Based Rehabilitation
7. Stigma reduction and advocacy
8. Health and social care integration

The LogisticsThis strategy is based on the achievement of deliverables within five years at an estimated cost of £24 million. A number of the projects are already in progress, some are developed and requiring funding, while other areas are gaps representing urgent priorities. 

ILEP Board Members, in approving this strategy, highlighted the importance of strengthening the links between research and field operations. Research into chemoprophylaxis for example, ties in with the recommendation of the WHO’s Enhanced Global Strategy to Further Reduce the Disease Burden Due to Leprosy 2011 – 2015 to examine contacts of persons diagnosed with leprosy.  Such links are given prominence within the Research Strategy since combining such elements more effectively could have a big impact on leprosy control. Success in the other research areas could have an even more significant impact on leprosy around the world.

The General Secretary of ILEP, Mr Douglas Soutar, welcomed this clear identification of research priorities in leprosy and expressed his optimism that the declining interest in leprosy research can be reversed if ILEP Members and others can garner support for these vitally important fields of investigation. “Only with a sound evidence base and new tools will we be able to achieve our ultimate goal of a world without leprosy.”

ILEP Research Strategy

Douglas Soutar
General Secretary
International Federation of Anti-Leprosy Associations
Tel: 44 (0) 207 602 69 25 – Fax:  44 (0) 207 371 16 21 – Website: www.ilep.org.uk
E-mail: doug.soutar(at)ilep.org.uk

Survey on INFOLEP information services

Leprosy Mailing List – November 18th, 2011 

Ref.:   Survey on INFOLEP information services

From: C Voorend, Amsterdam, The Netherlands

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Dear Salvatore Noto,  

With regards to a survey on INFOLEP information services, I would kindly like to ask you to forward the herewith enclosed text to your readers.  Since I need to finish this evaluation by Wednesday already, I need to kindly ask you for passing this through as soon as possible.  May it be possible to notify them before the weekend?  Then I hope in 3 days time many people will be able to respond.

With many thanks in advance.  

Best regards,  

Carlijn Voorend

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Dear Dr. Noto,

Infolep/Netherlands Leprosy Relief would like to invite your readers for a short user-survey on Infolep's services.  We are currently evaluating the services of Infolep and the (future) information needs of the leprosy community.  We would highly appreciate the LML-subscribers (users and non-users) to fill in this short questionnaire before November 22nd.  This takes about 10-15 minutes and is accessible viahttps://www.surveymonkey.com/s/XJ3X5HX.

Infolep is the international knowledge centre for leprosy and related subjects (www.leprosy-information.org; www.infolep.org).  Infolep facilitates global access to many e-resources through the integrated ILEP / Infolep website.  Infolep is available for anyone involved in leprosy from researchers and students, to programme managers and field workers.  The library is based in the Netherlands.  Future strategic directions focus on becoming a decentralized multilingual, dynamic online portal (database with one interface) built up from Infolep’s collections and the collections of partners.

Questions or a request for a word-version of this survey can be pointed out to (c.voorend[at]leprastichting.nl , infolep@leprastichting.nl, or +31 20 59 50 530).

With many thanks in advance.

Yours sincerely,

Carlijn Voorend

Netherlands Leprosy Relief

Leprastichting / Netherlands Leprosy Relief (NLR)

Postbus / P.O. Box 95005

1090 HA Amsterdam

The Netherlands

Tel: +31 20 5950500

E-mail: C.Voorend(at)Leprastichting.NL

Web: www.leprastichting.nl

Demise of Dr R Ganapati

Leprosy Mailing List – November 15th, 2011 

Ref.:   Demise of Dr R Ganapati

From: VV Pai, Mumbai, India

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Dear All,

We deeply regret to announce the sad and sudden demise of Dr R Ganapati, Founder and Director Emeritus, Bombay Leprosy Project (BLP), on Sunday 13.11.2011.  He passed away after a brief illness and hospitalization subsequent to his earlier longstanding cardiac ailment on 13^th Nov 2011.

Dr R Ganapati passing away is a great loss to the nation particularly to the Research and Medical fraternity including social workers and leprosy patients.  His vision and mission of Leprosy Free World will be kept going by his committed team.  He is survived by wife and two daughters.  His death is deeply mourned by the Staff of BLP, Management, Well Wishers and Patients.

With kind regards,

Dr V V Pai
Director BLP

Early diagnosis and treatment is the key in the fight against leprosy

Leprosy Mailing List – November 13th, 2011 

Ref.:   Early diagnosis and treatment is the key in the fight against leprosy.

From: H K Kar, New Delhi, India

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Dear Dr Noto,

Thank you very much for circulating Dr Saunderson’s message and the Final Report of the “Leprosy Vaccine Summit” (LML Nov. 08th, 2011). 

Rethinking of leprosy vaccine research is a positive approach in the direction of leprosy eradication from the globe.  It should be cost effective even for vaccination of contacts.  In India we were all involved in vaccine trial using various atypical mycobacterial antigens like Mw, ICRC, BCG etc. in last three decades with some success.  However, it could not be implemented in the field due to lack of cost effectiveness.  Chemoprophylaxis has shown some success.  Ultimately it is the early diagnosis and treatment, the key to eradication.

Regards,

Dr (Prof.) H K Kar
Consultant & HOD
Department of Dermatology, STD & Leprosy
P.G.I.M.E.R. and Dr Ram Manohar Lohia Hospital
Baba Kharag Singh Marg
New Delhi-110001

Many clinicians are not taught to really examine the nerves

Leprosy Mailing List – November 12th, 2011 

Ref.:   Many clinicians are not taught to really examine the nerves.
From: G. Warren, Sydney, Australia

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Dear Dr  Noto,

Thank you very much for publishing the photos and thank you Dr Barreto for sending them in (LML Nov. 7^th, 2011). 

It is so good to see good photos of typical cases and, I especially appreciate the photos of the nerves.  Many clinicians are not taught to really examine the nerves and I frequently have been able to make a final diagnosis by finding an altered radial or ulnar nerve on the back of a hand.  One horse jockey had no feeling in some toes and no one could diagnose till I showed them the large superficial peroneal nerve!

One teenager, in Asia, complained of numbness and parasthesia, of index and long fingers and had no other obvious symptoms or signs so the general doctor, to whom he went, sent him  to a psychiatric hospital for many months.  Eventually they got him out and when I saw him he had a very large hard radial nerve on the back of that hand and large lymph nodes in neck and groin.  A Biopsy of one of them showed classical leprosy that even the  experienced professor was thrilled at finding- he was not often sent biopsies of lymph nodes!  Poor boy fortunately he did not develop any further major deformity.  Certainly not the classical case- but something to be aware of.

Thank you for the picture of the sural nerve abscess.  I must confess that although I have felt many nerve abscesses and seen many large sural nerves I have never seen one abscess in that manner in the middle of the calf.  It all goes to show that what we do not look for we will never see!  I wonder what I have missed?  Thank you for that.

Grace Warren.

Castle Hill, Sydney Aust.

Prev.  Advisor for Leprosy for the Leprosy Mission in Asia 1975-1995.

What is in paucibacillary (PB) leprosy?

Leprosy Mailing List – November 12th, 2011

Ref.:   What is in paucibacillary (PB) leprosy? From: J Barreto, Bauru, S. Paulo, Brazil

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Dear Dr Noto,

Thank you very much to my friend Dr Ben Naafs, and also to Dr Pieter Schreuder for their comments (please see LML 9^th Sept., 2011).

1. Yes, there is a spectrum in leprosy classification, and low resistant tuberculoid is a fact, even though I have seen only less than 10 cases in more than 10 years, and in more than 15.000 slides of leprosy cases which I saw during 8 years as dermatopathologist at the Instituto Lauro de Souza Lima (ILSL).

2. According to 1971 Ridley’s Classification (Five from seven groups), there is a group called TI (Indefinite Tuberculoid), who develops type 1 reaction, but this group is not the same of tuberculoid reactional described by Wade and Lauro de Souza Lima in the beginning of the 20 century.  The name reactional tuberculoid leprosy, grouped later with BT patients in R&J Classification 1962/1966, should be deserved to patients with usually a lesion clinically and histopathologically indeterminate (early), whose developed, in most cases, a reaction in the first or second month of therapy, usually with few or no nerve symptoms, and the normal evolution was to cure.  These patients had a Mitsuda reaction of 2+, i.e., 6 to 10mm diameter, different from TT patients (>10mm or ulcerated).  Ridley, in his paper "Skin biopsy on Leprosy", 1987, second edition, pointed that TI is not the same as TR, though both undergone reactions.  At the ILSL we recognize 2 groups of low resistant tuberculoids: "T in reaction", which in turn are really BT patients, i.e., annular tuberculoid lesions with satellite lesions and erythema after the beginning of treatment, and "reactional tuberculoid", described above.

3. It is also important to know that is very difficult to distinguish, even histopathologically, true TT from BT cases.  Dr Fleury published a paper about this, in Hansenologia Internationalis.  Ridley (1974) pointed some clues, as the lower destruction of epidermis and dermal nerve branches, as well as the presence of more Langhans giant cells in granuloma, but the main clue is the bacilloscopy (slit-skin smear examination), and sometimes only the evolution over long term follow up.

4. About bacilloscopy, as many as 90% of smears are made with bad quality in Brazil, and I believe that few technicians in the world, as well, are able to perform it correctly.  I performed a study in 2010, in the state of Mato Grosso do Sul, Brazil, that I am going to present on the next International Leprosy Congress in Brazil.  Why I made a study in this state? Because the quality of smears, on indirect evaluation, was said more than 99% good, and for this reason, it was the model for the country.  Nevertheless, when we went to the field, and on direct evaluation, less than 10% of the smears were made in good conditions, i.e. good collection, fixation, staining and reading.  This is the likely reason which explains why patients with less than 5 lesions are said PB: the smear collection from the lesions needs a good technics, and usually it is not possible to make it with tools other than the fingers, and for this reason almost all technicians DO NOT COLLECT from lesions.  This is a fact.  Once in cases of initial borderline leprosy the bacilli are found only in lesions, of course, index points will show no bacilli, and patients will be considered wrongly PB.

5. How long must we wait to say the patient is healed?  5yrs?  10yrs?  How many long term follow up of PB patients, with good methodology, are described on literature?  On my recent review of literature for my PhD thesis, ALL of them had less than 10yrs, and ALL the relapsed cases in these studies were diagnosed only by spontaneous demand.  If we wonder that M. leprae can stay dormant in Schwann cells as many as 10yrs, and duplication time is almost 2 weeks, how many time must we wait to find and show viable bacilli on skin biopsies, or even on smears (which have lower accuracy), in order to distinguish between reversal reaction and relapse, after a short course of treatment in a borderline patient?

6. Finally, if, in a normal distribution of cases in the spectrum, only 10% have Mitsuda reaction positive (Ridley, 1974), and only these patients are able to destroy dormant bacilli inside nerve fibers, once metabolic inactive M. leprae will not be destroyed by MDT, what will be the real percentage of good prognosis MDT PB treated patients?

These are only some questions, which I still do not have answers.

Regards,

Jaison

What is in paucibacillary (PB) leprosy?

Leprosy Mailing List – November 9th, 2011 

Ref.:   What is in paucibacillary (PB) leprosy?

From: B Naafs and P A M Schreuder, The Netherlands

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Dear Salvatore,

We thank Dr. Jaison for his message “What is paucibacillary (PB) leprosy?” (LML Oct. 15^th, 2011).  We just want to make a few observations to add to the discussion.

1. Dr. Leiker recognised that there existed a classification between tuberculoid (TT) and borderline tuberculoid (BT) leprosy.  He called that LRT = Low Resistant Tuberculoid.  It presents one or a few lesions (not symmetrically distributed) with a few satellites.  Skin smears are mostly negative.  It was a group of patients who hardly had problems or went into reaction.  It is a pity this was never taken up by the international leprosy community.

2. In the old times BT with a max. smear bacteriological index (BI) of 1+ were indeed treated as PB.  It later on turned out that especially BT with multiple lesions relapsed.  In those cases were nerve biopsies were taken, many of those had a positive RC nerve biopsy (Dr. Ben Naafs).  To reduce the PB relapse rate to a lower level a new clinical classification system was put in place: those patients with less than 6 lesions or with not more than 1 nerve involved were called PB.  That indeed had the intended result.

3. Indeed, when smears would be taken in PB patients, 2 - 4% will be positive (ref. 1).  Sometimes even a single lesion turns out to be positive.  In case of  nerve biopsies in PB patients even more will be  positive.  Nevertheless, we do not find a relapse rate of 2 - 4% in PB patients, much less so.  Even in the old times, not all BT smear positives or with many lesions relapsed.

4. The first result of the Uniform MDT schedule shows  that the PB relapse rate has become even lower than the MB relapse rate.  Which could have been expected.

5. We are aware of Opromolla’s hypothesis, but which is not shared by many.  In Thailand we saw and treated (with steroids) successfully many patients with a late reaction.  The big majority of these patients improved and never relapsed (Dr. Pieter Schreuder).

May we also refer to the article by Maria Angela Bianconcini Trindade et al (reference 2): The histopathological changes in 167 biopsies from 66 leprosy patients were studied.  The patients were selected when their sequential biopsies demonstrated either different patterns or maintained the same pattern of granulomatous reaction over more than two years during or after the treatment of leprosy.  In 57 of the patients studied, a reactivation was seen which coincided with a decrease in the BI, suggesting that this reactivation (reversal reaction or type 1 leprosy reaction) coincides with an effective capacity for bacteriological clearance.  In nine patients, an increase of the BI or persistence of solid bacilli occurred during the reactivation, indicating proliferative activity, suggestive of a relapse.  The histopathological aspects of the granulomas were similar in both groups.  CONCLUSION: bacteriology (slit-skin smear examination) provided the only means to differentiate a reversal reaction from a relapse in patients with granulomatous reactivation.  The type 1 leprosy reaction may be considered as a partly effective immune reconstitution (reversal, upgrading reaction) or as a mere hypersensitivity reaction (downgrading reaction) in a relapse.

Abraços,

Ben Naafs

Pieter AM Schreuder

References
1.Rao PS, Ekambaram V, Reddy BN, Krishnamoorthy P, Kumar SK, Dutta A.Is bacteriological examination by skin smear necessary in all paucibacillary leprosy patients in mass control programmes? Lepr Rev. 1991;62:303-309
2.Trinade MA, Benard G, Ura S, Ghidella CC, AVelleira JC, Vianna FR, Marques AB, Naafs B, Fleury RN. “Granulomatous reactivation during the course of a leprosy infection: reaction or relapse. PLoS Negl Trop Dis. 2010 Dec 21;4(12):e921

Indian Council of Medical Research (ICMR) calls for proposals to evaluate Leprosy Eradication Programme

Leprosy Mailing List – November 8th, 2011 

Ref.:   Indian Council of Medical Research (ICMR) calls for proposals to evaluate Leprosy Eradication Programme

From: S. R. Narahari, Kasaragod, Kerala, India

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Dear Dr Noto,

Can you please circulate the enclosed “ICMR Proposal”?  I think many leprosy mailing list readers might be interested.

ICMR calls for proposals to evaluate Leprosy Eradication Programme

The Indian Council of Medical Research (ICMR) has called for research proposals to evaluate the National Leprosy Eradication Programme (NLEP).  The deadline for scientists and doctors to submit proposals is December 15. 

India achieved leprosy elimination as a public health problem in December 2005, however there are pockets of endemicity where the number of new case detection is still high and the community is at higher risk of being infected with M. leprae.  Over 200 districts of India, in parts of Bihar, Madhya Pradesh, Maharashtra and Tamil Nadu recorded more numbers last year.

Therefore, to address these issues, Secretary, DHR and DG, ICMR has taken steps to promote research by funding projects on the Priority Areas of research in leprosy given below:-

Health Systems Research & Operational Research on integration issues.
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Studies evaluating current IEC strategies in increasing community awareness.

Studies addressing psychosocial issues for formulation of newer approaches to reduce the stigma, for encouraging early detection and completion of MDT.

Studies for encouraging early detection (through self-reporting) and completion of MDT.

Development of indicators for stigma at community level and evaluation of participation scale for wider use.
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Nerve Damage and Care of the Disabled at the Community level and impact of field interventions.

Epidemiological studies
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Estimating trends/prevalence/incidence in India with special emphasis on biological reasons and genetics.
.
Behavioural and social factors influencing the epidemiology of disease.
.
Transmission dynamics of leprosy to identify sources/genotypes, its presence in soil and water and establish chain of transmission in endemic pockets.
.
Study addressing issues related to changing profile of disease.
.
Precise epidemiological data on pooled grade-2 disabilities in rural communities.
.
Leprosy in Children / dynamics of childhood leprosy

Clinical – Research
.
Clinical - Laboratory studies on complications of leprosy and its management.
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Evaluating effect of newer anti-leprosy drugs/molecules.
.
Studies addressing leprosy relapse and reactions.
.
Detection of early bacteriologically positive Multibacillary Bacillary leprosy and its early management.
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Use of immunomodulators in relation to leprosy and tuberculosis in children.
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Use of chemoprophylaxis in household contacts.

Operational Research.
Effect of inclusion of leprosy in a community based integrated rehabilitation disability care programme.
.
Research on disability prevention and identification of predictors of early nerve damage in leprosy.
.
Varying distribution pattern of patients with nerve damage, acute, chronic or "silent".
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Identification of pre-clinical disease markers like nerve conduction tests etc.

Basic Research
.
Studies using genomics, proteomics and other approaches to understand the host-parasite interaction and pathogenesis of the disease.

Basic Immunology
.
Translational research including newer technology such for detection of M. leprae from environment.
.
Tools to identify leprosy susceptibility

Drug resistance studies
.
Resistance to anti-leprosy drugs.
.
Studies on use of second line newer drugs for resistant and relapse cases.

Surgical aspects
.
Trials on immediate post-operative active mobilization of hand following deformity correction and to investigate if the benefits of tendon transfers can be improved with early mobilization.
.
Effects of early mobilization to reduce dependence on therapist to attain a satisfactory result.
.
Investigation of economic and social impact of this technique in varied patient groups.
.
Trials regarding the safety of immediate active mobilization protocol (IAMP) to other tendon transfers.
.
Assessment of economic impact of earlier return to work by RCS patients and also the cost of care.
.
Understanding the neurobiology of tendon transfer rehabilitation.
.
Standard of ulcer care in leprosy

Concept proposals (limited to 5 pages) are invited from scientists of various recognized Research Institutions, Universities, Medical Colleges etc. in India. The concept proposals should include the following details.

1) Title of the concept
2) Name, address, telephone number including the mobile no. and e-mail ID of PI & Co-PI
3) Participating Institutions
4) Need for the study
5) Type of study: Hospital based (clinical), Field based (epidemiological), Lab. Based (Basic)
6) Major objectives and milestones
7) Research focus, short term goals, long term goals and scientific strategies to achieve this
8) Research Plan: Including sample size statistically calculated, place and methods of collection of samples, detailed methodology, etc.
9) Expected deliverables/Outcomes
10) Relevance/Applicability in the national interest.
11) The main strength(s) which merit(s) this support should be described in less than 200 words.
12) A brief biodata of PI and Co-PI (along with proof of expertise in form of publications).

After review the investigators of the selected proposals would be invited to submit the full proposals.  The concept proposal (one electronic copy and 15 hard copies) is to be sent on or before December 15th 2011.  The project proposals may be sent to, `
Dr. Manjula Singh,
Scientist `C',
Division of ECD,
ICMR, V. Ramalingaswami Bhawan, New Delhi 110-029


Best regards,

Dr. S. R. Narahari MD; DVD (dermatology)
Director
Institute of Applied Dermatology
6/1665, Nayaks Road, Kasaragod, Kerala, India
Phone: +91-4994-223687 & 230116; Res +914994223625
www.iad.org.in

Leprosy Vaccine Summit – Final Report

Leprosy Mailing List – November 8th, 2011 

Ref.:   Leprosy Vaccine Summit – Final Report

From: P Saunderson, Greenville, SC, USA

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Dear Salvatore,

As you may know, ALM has been funding work for some years on the development of a new leprosy vaccine.  We recently had a workshop to discuss progress and prospects.  I’ve attached the final report of the meeting, which may be of interest to some of your readers.

With kind regards,

Paul Saunderson MD, MRCP

Medical Director, American Leprosy Missions

Short user-survey on INFOLEP's services

Leprosy Mailing List – November 8th, 2011 

Ref.:   Short user-survey on INFOLEP's services

From: C Voorend, Amsterdam, The Netherlands

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Dear Dr. Noto,

Infolep/Netherlands Leprosy Relief would like to invite the leprosy mailing list (LML) readers for a short user-survey on Infolep's services.  We are currently evaluating the services of Infolep and the (future) information needs of the leprosy community.  We would highly appreciate the LML-subscribers (users and non-users) to fill in this short questionnairebefore November 15th.  This takes about 10-15 minutes and is accessible via:-   https://www.surveymonkey.com/s/B6M9WKZ.

Infolep is the international knowledge centre for leprosy and related subjects (www.leprosy-information.org; www.infolep.org).  Infolep facilitates global access to many e-resources through the integrated ILEP / Infolep website.  Infolep is available for anyone involved in leprosy from researchers and students, to program managers and field workers.  The library is based in the Netherlands.  Future strategic directions focus on becoming a decentralized multilingual, dynamic online portal (database with one interface) built up from Infolep’s collections and the collections of partners.

Questions or a request for a word-version of this survey can be pointed out to (c.voorend[at]leprastichting.nl or +31 20 59 50 530).

With many thanks in advance.

Yours sincerely,

Carlijn Voorend

Netherlands Leprosy Relief

Carlijn Voorend 

Leprastichting / Netherlands Leprosy Relief (NLR) 

Postbus / P.O. Box 95005

1090 HA Amsterdam

The Netherlands

Tel: +31 20 5950500

E-mail: C.Voorend(at)Leprastichting.NL

Web: www.leprastichting.nl

Community care of the physically disabled due to leprosy

Leprosy Mailing List – November 7th, 2011 

Ref.:   “Community care of the physically disabled due to leprosy”

From: R. Ganapati, BLP Mumbai India

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Dear Dr Deepak,

Thank you for your comments (LML November 7^th, 2011).  I am extremely glad that you have taken interest in this piece of study.  This crucial community based investigation has evoked no response from any dermatologist or specialists in community medicine.  (Pardon my not using the words "persons affected by leprosy" throughout the text of the article).

(1)  The study aims at POWD (Prevention of Worsening Disability) rather than POD.  The work is totally carried out by village level youth including a few young cured leprosy patients.  They are a part and parcel of the villages where the patients are derived from and they are familiar with the local logistics.  Recently a donation of 2 to 3 motorcycles has greatly facilitated their mobility and has brought down the cost of commuting to remote corners of the taluka.  

After simple training they surveyed the villages and identified visible disabilities under the supervision of experienced paramedical workers mostly retired from govt service.  Diagnosis was confirmed by the staff of Bombay Leprosy Project.  As detection of grade I disabilities will involve eliciting history and physical examination, this was not given the priority.  As the prevalence of frank, uncared for mutilated limbs were rampant (prevalence rate of grade 2 disabilities alone being about 25 per 10,000) and needed doorstep services, we limited the object of the study to care of the already disabled (POWD) rather than identifying and diagnosing grade 1 which is too much to expect from the volunteers.  However, whatever  cases  came to our knowledge during surveys were examined by senior staff and handed over to the PHC with due advice on how to manage the patients.  The follow up of such cases was beyond the scope of this part of the study.  Now that some volunteers are motivated and experienced we may take this up as a separate investigation provided we get donor support. 

(2)  Almost all patients had completed the course of MDT.  The list of patients released from treatment (RFT) was obtained from the PHCs.  It was difficult to identify from the rudimentary details obtained from old records.  This list had very few patients, whereas surveys by the volunteers were the main source of patients.  Very few patients under active treatment did have grade 2 disabilities.  As they were expected to attend PHCs we could only "advice" the govt staff on care of limbs (which was mostly not followed) and our staff had to offer domiciliary care. Offering MDT was not the aim of the study as PHCs were expected to take care of this.

(3)  All the grass root level work was carried out by rural workers receiving remuneration on the days they worked.  Physiotherapists and trained staff specializing in ulcer dressing were used for offering training to volunteers in the local language.  Demonstration of the techniques like dressing and, simple exercises, usage of MCR footwear and wax therapy by the expert team was easily picked up and practiced.  Plantar ulcer is the biggest problem and most of the simple ulcers are attended to by the volunteers.  Physiotherapist and dresser are needed for refractory ulcers needing minor surgery under aseptic conditions.  This is also practiced at the door step to the maximum extent possible.  Occasionally plaster casts have also been applied.  Patients beyond the scope of domiciliary service are brought to Bombay in the vehicles for special footwear and amputation etc. 

(4)  As for "home self care", among young, motivated, health conscious patients we have found this is practised after proper counselling.  Most of the elderly patients (many of whom are alcoholics) hardly care for their limb protection if left alone.  There were instances where family members offered care after counselling.  I believe attitude towards self-care is a special subject and in the areas adopted it is possible to study this. 

(5)  I fully share Dr Sunil , your apprehensions  about the PHC staff taking over these activities.  At present they are passive observers from a distance.  However if the health planners among the govt officials study the "Shahapur Model" as it is now called and adopt it seriously, this may be a break through and will benefit the community in the distant future.

(6)  This is just a preliminary venture in a deprived tribal population living in inaccessible hilly terrains.  We have started an independent assessment by a social scientist through a questionnaire method in a total of 656 disabled patients in Shahapur taluka, though donors do not seem to be interested in evaluation.  A sample has been selected consisting of patients, household relatives, nearby community members, volunteers etc. and the interview is in progress.  The impact of the physical care from a medical angle on deformity status is also in progress.  As the cost of every item is carefully recorded, cost analysis is also contemplated.  A Research Committee of experts has been formed to offer guidance.  It is also possible that the service after some months may have to be abruptly withdrawn for want of donor support.  Research in this neglected aspect of the care of the disabled hardly has any glamour attached to it. 

I don't claim that we have carried all the technical knowledge available in institutions into the community. This is just an attempt to understand the implications of grass root level work by local village youth in the back ground of the Utopian concepts of CBR as enshrined in the definition.We have shown that penetration of technology into the remote areas is possible to some  extent and it is cost effective.   

If there are any further clarification is needed by LML readers, I will be pleased to answer. 

With best wishes 

Dr R Ganapati

Bombay Leprosy Project  

Community care of the physically disabled due to leprosy

Leprosy Mailing List – November 7th, 2011 

Ref.:   “Community care of the physically disabled due to leprosy”

From: S Deepak, Bologna, Italy

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Dear Salvatore,

I would like to thank Dr Ganapati for sharing the interesting paper about “community care for large number of persons with disabilities due to leprosy in Thane district of India” (LML Nov. 2^nd, 2011).  I have a few questions to him for a better understanding of this paper:

(1) The first phase of the project identified around 3000 persons with disabilities due to leprosy – does that include persons with WHO grade 1 disabilities (loss of sensation without visible disabilities)?

(2) In the second phase and third phase of the project, Dr Ganapati mentions identification of “500 patients” and “140 patients” – are these persons with disabilities due to leprosy or they also persons who need anti-leprosy treatment?

(3) In phase 3, what kind of staff was used for door-to-door delivery of home care? Were they professionals like physiotherapists or specialized staff? These were employed specifically by the project?

In their activities, the paper mentions different interventions but does not say anything on self-care.  Was teaching self-care part of the activities?

I understand that the paper is providing an overview but it will be interesting to understand the role played by persons affected with leprosy themselves, their families and communities in these activities.

I have some doubts about the feasibility of such level of activities being carried out by PHC staff as part of their routine work and opinion of Dr Ganapati on this issue will be useful.

Finally, were there activities related to other problems faced by persons affected with leprosy in this project such as related to social exclusion, poverty, etc.?

With best wishes,

Sunil

Dr. Sunil Deepak

AIFO, Bologna, Italy

Tuberculoid (TT) leprosy

Leprosy Mailing List – November 7th, 2011

Ref.:   Tuberculoid (TT) leprosy
From: Barreto J, Bauru, S. Paulo, Brazil

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Dear Dr Noto,

Please find herewith enclosed, clinical and histopathology pictures of cases of tuberculoid leprosy.  All comments from the LML readers will be welcome.

Regards, 

Jaison A. Barreto
Instituto Lauro de Souza Lima (ILSL)

Acute abdomen in lepromatous (LL) leprosy

Leprosy Mailing List – November 3^rd, 2011

Ref.:   Acute abdomen in lepromatous (LL) leprosy.
From: Barreto J, Bauru, S. Paulo, Brazil

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Dear Salvatore, 

The questions that must be made about this case:

1. Is this patient with active (non treated) lepromatous leprosy?  If the answer is yes, Lucio's fenomenon must be ruled out; once it is not uncommom deep vascular trombosis in this type of leprosy.

2. Is this patient in erythema nodosum leprosum (ENL or type 2) reaction?  As well as in Lucio's fenomenon, deep trombosis also can occur during this reaction.  Dr Opromolla and Dr Raul Fleury published cases of deep vascular trombosis during type 2 reaction, in the past, in Hansenologia Internationalis (www.ilsl.br).  Some cases developed even myocardial infarction.

If the answer to both questions is no, other causes must be involved.

Regards,

Jaison 

“We changed and gave the clofazimine with a meal”

Leprosy Mailing List – November 3^rd, 2011 

Ref.:   “We changed and gave the clofazimine with a meal”.

From: G Warren, Sydney, Australia

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Dear Dr Noto,

Thank you for publishing that letter and picture by Dr Peton.  He does not mention what antileprosy medication the patient was on. -  was it multi-drug therapy (MDT)?  Was the patient on clofazimine – at what dose and for how long?

My comments are that in the early days we often used to use clofazimine as monotherapy (when doing the initial drug trials) and we used to give a dose of oil with each dose as initially recommended.  But we often gave it in 200 or 300m mgms daily.  Yes, it did produce a very dark skin in the Chinese patients.  A few of the patients did complain of abdominal discomfort if they did not take the oil. 

One patient was actually admitted to the major govt hospital and operated on for a suspected abdominal problem as he complained of persistent gastric discomfort.  From Memory (this was about 1970) they found very heavy pigmentation with clofazimine in the mucosa of the ileum and colon which were apparently very dark in colour (No I did not see it nor do I have a photo- good on you for getting the record).  But no evidence of gastric ulceration or other regular cause of gastric discomfort.  From that incident we changed and gave the clofazimine with a meal and had no further similar complaints.

Sometime in the 1980s an article appeared stating that clofazimine caused diarrhoea and similar problems but the case written up also had amoebic dysentery!  No we (treating literally hundreds of patients and doing regular path testing) found that clofazimine causes very few if any complications other than the discolouration of skin that fades within about a year of discontinuation.  But we did find that many of the biochemical abnormalities present (eg poor liver and kidney function) initially were corrected within the first year.- oh yes we treated any obvious abnormalities such as anaemia and parasites! 

I am sorry I cannot quote the publications concerned now-  but would be interested as to the symptoms of the patient he speaks about and recommend the clofazimine be given with his meals and or oil, in future.

Yours sincerely,

Grace Warren

Previously superintendent Hong Kong leprosarium 1960-75 and

Adviser for The Leprosy Mission In Asia for 1975-1994.

Unnecessary laparotomy for abdominal pain and fever due to clofazimine

Leprosy Mailing List – November 3^rd, 2011 

Ref.:   Unnecessary laparotomy for abdominal pain and fever due to clofazimine

From: Bryceson A, London, UK

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Dear Salvatore

I wonder if the patient was taking clofazimine.  If so, the red coloration might be due to clofazimine.  Clofazimine can cause abdominal pain, sometimes mimicking an acute abdomen.  The pain is thought to be due to an inflammatory reaction to crystals of the drug deposited in the small bowel mucosa and mesenteric lymph nodes.  For this reason the high starting dose (300 mg) of clofazimine that is used to control ENL (Type 2) reactions, should be reduced after 2 or 3 weeks.  References go back a long way, but here are some recent ones.

Jadhav MV, Sathe AG, Deore SS, et al. Tissue concentration, systemic distribution and toxicity of clofazimine--an autopsy study. Indian J Pathol Microbiol. 2004;47:281-283.

Mathew BS, Pulimood AB, Prasanna CG, et al. Clofazimine induced enteropathy--a case highlighting the importance of drug induced disease in differential diagnosis. Trop Gastroenterol. 2006;27:87-88.

Sukpanichnant S, Hargrove NS, Kachintorn U, et al. Clofazimine-induced crystal-storing histiocytosis producing chronic abdominal pain in a leprosy patient. Am J Surg Pathol. 2000;24:129-135.

I made the same mistake in 1979

Bryceson A. Unnecessary laparotomy for abdominal pain and fever due to clofazimine.  Lepr Rev. 1979 Sep;50(3):258-9.

Best wishes,

Anthony Bryceson

Abdominal complication of clofazimine

Leprosy Mailing List – November 3^rd, 2011 

Ref.:   Abdominal complication of clofazimine

From: W S C Smith, Aberdeen, UK

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Dear Dr Peton,

Thank you for circulating this photograph.  Had the patient been taking clofazimine – if so at what dose and for how long?

There are a few case reports in the literature of acute abdomen/abdominal pain associated with crystal formation due to clofazimine – I have attached reports from India, Thailand and Singapore – there are probably a few more.

Cairns Smith

http://informahealthcare.com/doi/abs/10.3109/00313029309068897

“PB-ish” leprosy in the paler skins

Leprosy Mailing List – November 2^nd, 2011 

Ref.:   “PB-ish” leprosy in the paler skins

From:  G  Warren, Sydney, Australia

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Dear Dr Noto.,

Thank you very much for circulating the TEXT and SLIDES of “The Diagnosis of Leprosy”.  Of course, last year, when the original version was produces I was carefully following and participating the discussions together with you, Drs Schreuder and Naafs.  With pleasure, I also offered some contributions, to help the newer workers to learn the tricks we have learnt, by often bitter experience, over many years. -

There seemed to be a number of letters in the week ending 16^th October and some excellent pictures on dark skin.  However, last weekend I wrote to you a letter that some how seems to have slipped through  the cracks, that I think would help especially those workers faced with the PB-ish [paucibacillary] leprosy in the paler skins but, I have seen no evidence of it so, I send again (after this note) in the hope that you will be able to circulate it.  I feel it makes some important points about the diagnosis and management of PB-ish leprosy

Sunday 16^th October.

Dear Dr Noto,

Thank you for publishing Dr Barreto’s letter [LML Oct. 15th, 2011 “What is paucibacillary (PB) leprosy?”].  I have seen many patients who were initially treated as paucibacillary leprosy according to the WHO guidelines who have returned 3-10 years later with obviously mid borderline/borderline lepromatous (BB/BL) type lesions.  On careful history taking one can realise that initially the patients was never properly classified.  According to WHO the PB leprosy is less than 5 lesions, but in their guide book there is no other specific requirement.  PB implies few bacilli and in true tuberculoid (TT) leprosy the lesions are usually well defined and on one area of the body implying that the bacilli are not wide spread.  However bacilli can well be in nerves in other parts of the body and they do not produce skin lesions.  As Dr Barreto implies patients may well be multibacillary (MB) with marked neural leprosy but very few skin lesions.

In Teaching in Asia I used to stipulate that to be treated as PB the patients’ lesions must be all in one area of the body; this unfortunately, is not  according to WHO classification.  We often had no possibility of doing a slit-skin smear examination and so deemed it preferable to give the MB treatment and prevent “relapses”.  In the last 10 years I have treated a number of immigrants to Australia who have previously been treated in an endemic country for PB leprosy and have represented 3-7 years later, in Australia, with definite BB-ish leprosy!  One almost pure lepromatous (LL) type of disease and the lesions were hardly visible even on the relapse.  Yes I call it relapse not reinfection.

As Dr Barreto states the bacilli live in the nerves, and may be in very high concentration in the nerves while there are few in the skin, and it has been shown that the bacilli can survive, for many years, in the nerves  in spite of heavy doses of rifampicin, and can emerge later, still fully sensitive to rifampicin, to  continue the Infection.  So, I would plead with clinicians if there is any possibility of having less that excellent natural resistance, that the patient be given MB treatment rather than PB.  

Also treat intercurrent medical conditions that could reduce the patient ability to deal with the leprosy infection.  Also do not just brush aside the possibility of relapse.  It turns up more frequently than appears in the statistics because there is now no continuous registrar and as Dr Rao states (in LML 15^th Oct)  it is difficult to convince the authorities that a patient has a relapse when he represents with new lesions.  He was previously stated to be cured when he finished the WHO stated duration of medication.  WHO official statement of relapse is very low so makes the present policy (of PB and MB drug routines) seem effective.  I know that most of the real LL, and BL patients I treat have much more anti-leprosy medication that the stated 12 months.  We do not want relapses in our clinics.

Hence I agree - - What is paucibacillary leprosy?- - by definition it is those with few bacilli - - therefore those in whom the bacilli have not yet been able to multiply frequently because of the short duration of infection eg. as in Indeterminate (I) leprosy- or those who have enough natural resistance to have been able to produce effective T lymphocytes to control the infection so the numbers cannot become great.  In both of these situations I feel we need to follow up the patient at least for several years to make sure that they really are cured, if we give the 6 months double drug therapy.

Let’s really control the infection by ensuring that those we do diagnose are fully treated to eliminate their infection.  Let’s over-treat not under-treat.

Yours sincerely,

Grace  Warren

Sydney, Australia

Previously Adviser for The Leprosy Mission In Asia (1975-95)