The leprosy burden - Monitoring national trends would be “better”

Ref.:   The leprosy burden - Monitoring national trends would be “better”.

From: D Soutar, London, UK

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Dear Salvatore,

With regard to your recent posting of May 8^th, 2012.  The comparison of trends in New Case detection and Prevalence are interesting but as to your question of “which is better?” I would suggest that the question should be focused more on which (if any) is more ‘meaningful or more useful’ in terms of operational effectiveness of leprosy control programmes?  The key difficulty in looking at these global trends, whether with or without India, is how to interpret them in ways that have some practical and operational meaning for leprosy programme managers, field workers and ultimately for people affected.

In recent years there has been much written about the value and reliability, or otherwise, of ‘global’ leprosy data.  As the overall prevalence of leprosy has declined dramatically, the focus has naturally shifted towards reporting actual numbers of new cases detected in countries and even more importantly, the numbers of people detected who already have leprosy related impairments and disabilities.  Looking at the geography of leprosy and trends in specific countries is a much more useful endeavour when thinking about how to sustain effective leprosy services.  Thus, while the annual publication of global data in the WER is still useful for gaining an overall global picture, those WERs which have focused on the trends of leprosy within specific countries have been much more useful and practical when trying to understand what is happening to leprosy at a country level and whether control is being effectively sustained and disabilities prevented.  Good examples of country-specific WERS in recent years include those on Indonesia, China, Yemen, Thailand and Vietnam.  These can all be found at http://www.ilep.org.uk/library-resources/wers-on-leprosy/2001-2010/ .  Similar country specific reports on Brazil and India would be most interesting given the continuing high caseloads in those countries.

With the achievement of global elimination as a public health problem in 2000, and the fact that the majority of countries have also achieved this goal, the emphasis has shifted more towards the recording of new cases, treatment completion rates and the reduction of leprosy related disabilities, stigma and discrimination.  The WHO’s Enhanced Global Strategy set the target of reducing the rate of Grade 2 disability in new cases by 35% between 2011 and 2015.  Monitoring national trends on these indicators would be “better” and more useful from an operational perspective than the global trends of either prevalence or incidence.

With best regards,

Douglas Soutar

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

Request of information about a tool designed to measure and monitor ulcers

Ref.:   Request of information about a tool designed to measure and monitor ulcers.

From: D Andersen, Chennai, India

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Dear Dr Salvatore,

Thank you for adding me to the mailing list.  I am a student at Brigham Young University in the U.S. and I am conducting an internship with a leprosy rehabilitation organization called Rising Star Outreach; they operate outside of Chennai in India.

I am currently seeking a tool designed to measure and monitor ulcers.  I am evaluating an organizations health services which includes a mobile medical clinic that visits leprosy colonies bi-weekly to provide any treatments, as well as training and supplies for self-care.  So, the tool needs to be sensitive enough to measure the impact their programs have on the treatment of ulcers.  Any direction for finding such a resource would be greatly appreciated.

Thanks,

Dane Andersen
Project Evaluation and Assessment Team
Brigham Young University

R.I.P. Dr CK Job

Ref.:   R.I.P. Dr CK Job
From: H. Srinivasan, Chennai, India

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Dear Dr Salvatore Noto and my LML friends,

I was shocked to learn that Dr. CK Job passed away two weeks ago, on 26^th May.  I understand he was 89 years old at the time of his death, but more than with anybody else in his case particularly, age is no valid excuse nor does it justify one’s passing away.  As I am getting older I find I am getting more and more lonely as my friends are gradually disappearing from the scene, one by one; Drs. Christian, Ramu, Ramanujam, Selvapandian, Fritschi, Ganapathi . . . and now Dr. Job.  It appears that along with leprosy, the breed of dedicated leprologists is also getting “eliminated’ by time!  

We may not have been communicating with each other frequently, but there was a mental rapport amongst us, transcending language, religion and our own individual specialties.  We valued our friendship and respected the others’ industry, scholarship, integrity, simplicity and sincerity and recognized our common concern which was the well-being of the individual leprosy-affected person, irrespective of the leprosy scenario in the community at large.  Dr. Job towered above most, if not all, of us, his contemporaries, in these qualities.  He was never pompous or overbearing even when most provoked to be so, and that more than anything else endeared him to me right from the beginning.  At this juncture I can only say that I have indeed been extremely fortunate that I came to know Dr. CK Job fairly early in my career and could claim him as a friend of mine.

H. Srinivasan
Surgeon (Retired)
25, First Seaward Road
Chennai 600 041
(South India)

“Madagascar en deuil”

Ref.:   “Madagascar en deuil” [French]

From: Ralaivao-Mano S, Antananarivo, Madagascar

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Bonjour à tous!

Suite à un paludisme grave (neuro-paludisme), nous avons le regret de vous affirmer que Dr NORO de la Fondation Raoul Follereau qui était avec nous lors de la formation à Bamako en février 2012, est décédé aujourd'hui le 08 juin 2012.

Prier pour elle, que son âme soit avec notre DIEU.

Dr Samuel RALAIVAO-MANO

Médecin au Service de Lutte contre la Lèpre

Responsable de suivi et évaluation

BP: 8669

ANTANANARIVO 101

MADAGASCAR

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Dear All,

Following severe (cerebral) malaria, we regret to say that Dr. Noro from the Raoul Follereau Foundation, died on June 8th, 2012.
Pray for her, that her soul is with our God.

Dr. Samuel RALAIVAO-MANO 

The diagnosis of leprosy is not always easy

Ref.:   The diagnosis of leprosy is not always easy

From: B Naafs, Munnekeburen, The Netherlands

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Dear Salvatore,

I refer to last week messages about early diagnosis of lepromatous leprosy.  Kindly, find in attachment the paper of J A da Costa Nery et al. “Hansen’s disease in a general hospital: uncommon presentations and delay in diagnosis” J Eur Acad Dermatol Venereol 2009 Feb;23 (2):150-6. Epub 2008 Sep 10.  I would be very grateful if you forward it to the leprosy mailing list.

The diagnosis of leprosy is not always easy, as it is generally stated and thought. To be aware that a condition or complaint could be leprosy is a start.  As leprosy is suspected it has to be proven.  The cardinal signs of leprosy have to be investigated.  They are loss of sensation in a skin lesion, enlarged peripheral nerves and positive slit-skin smear examination (*).  When two of these three signs are positive, leprosy is diagnosed. 

Ninety nine per cent of all leprosy patients can be diagnosed in the above mentioned way.  Herewith I will say a few words about one exception (indeterminate leprosy) and, two particular conditions namely: early lepromatous leprosy and diffuse lepromatous leprosy (also called Lapati’s leprosy or “Lepra bonita”).

Indeterminate leprosy

The diagnosis of indeterminate leprosy depends on awareness. Loss of sensation is often hardly present or is absent, nerves are not enlarged and skin smear is negative.  Even biopsy may be hardly helpful.  It is “the time that makes the diagnosis” and thus careful follow-up of the patient is needed for a few months.

Early lepromatous (LL) leprosy

In an early state LL leprosy is often not diagnosed, though these patients can be extremely infective.  Awareness and skin smear may be of help.  When people do not think of leprosy it can be easily missed. 

Diffuse lepromatous leprosy (Lapati’s leprosy)

In early and late diffuse lepromatous leprosy mostly nothing is to be seen or found, only the patient may complain of some aches and pain or having the feeling of dropping things or of sleeping skin.  In late diffuse leprosy the patient looks younger and has a smooth skin due to infiltration [lepra bonita].  Skin smears in both groups of patients are positive.

Nery’s  paper addresses these problems.  Herewith I report part of the conclusions:-

<< Multibacillary (MB) leprosy, especially close to the lepromatous end of the spectrum, may mimic other diseases, and the patient cannot be diagnosed without a biopsy or a slit skin smear examination.  Leprosy should be considered in all patients with skin lesions not responding to treatment, especially when they have neurological deficits, and live or have lived in a leprosy endemic area. >>

Ben Naafs

(*)

The Diagnosis of Leprosy

S Noto, P A M Schreuder and B Naafs

Leprosy mailing list - October 2011

Times of India News

Ref.:   Ref: Times of India News [Date: 7.6.2012] 
From: U Thakar, Mumbai, India

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Dear Dr Noto,

Please, upload this important news (see attachment) on the leprosy mailing list.  Times of India News [Date: 7.6.2012].  It is about the new division specifically for the disabled at the Ministry of Health in India.

Thanks and regards,

Uday Thakar

Mr. Uday Thakar

Hon. Secretary,

Hind Kusht Nivaran Sangh-Maharashtra Branch

C/o Acworth Leprosy Hospital Research Society

Wadala, Mumbai-400031

India

Email : hknsnational@yahoo.co.in

           acworthleprosyrre@yahoo.co.in

Leprosy detection rate in Rio de Janeiro State, Brazil

Ref.:   Leprosy detection rate in Rio de Janeiro State, Brazil
From: M Leide W. de Oliveira, Rio de Janeiro, Brazil

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Dear Dr Theuvenet,

Thank you for your interest [LML June 4th, 2012].  Our main intention was to correlate case finding activities and early diagnosis of Hansen´s Disease (HD).  In fact there are probably many factors influencing the reduction shown:

1.
When we started with local campaigns in all 4 districts, the strategic objective was to decentralize diagnose and treatment to family health level (each family health area covers about 1000 families) in Duque de Caxias municipality.  Certainly at that time there was a hidden prevalence of HD.  The family health program did not improve significantly since 2005.  However, the Municipal Control Program assumed diagnosis and treatment as well as better contact examination in those covered areas, which includes second dose of BCG.

2.
Since 2010 we organize again local campaigns in Duque de Caxias with almost the same strategy as done in 2003.  Next year, in 2013, the campaigns will be evaluated to see if there still is evidence of hidden prevalence or not.  One preliminary observation is that new cases diagnosed in the current campaigns are mainly adults and the numbers are much less than the 1º intervention.

Since I am not an epidemiologist, there may be some exhaustion of infected persons in this region, alongside those operational factors mentioned above and besides MDT effectiveness.

MLeide W. de Oliveira

Medical School/Federal University of Rio de Janeiro.

Leprosy detection rate in Rio de Janeiro State, Brazil

Ref.:   Leprosy detection rate in Rio de Janeiro State, Brazil
From: W. J.Theuvenet, Apeldoorn, The Netherlands

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Dear Dr. M Leide W. de Oliveira,

Thank you for sharing your utmost interesting statistics! It is encouraging to see [*] that in both areas the new case detection rate has come down between 2002 and 2010! 

Question:-

Can it be that the decrease is also influenced by a change in your approach for new case finding (household contact examinations and continuous local campaigns)?  It seems that in the earlier phase your campaigns focused on all 4 districts in Duque de Caxias, while later on the focus was on much smaller areas?

With best wishes,

Willem J. Theuvenet,

Reconstructive surgeon and leprologist.

About early diagnosis of lepromatous leprosy

Ref.:   About early diagnosis of lepromatous leprosy
From: M Leide W. de Oliveira, Rio de Janeiro, Brazil

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Dear Dr Noto,

I share the same point of view of my colleagues regarding the last discussion on the LML about early diagnosis of lepromatous (LL) leprosy.  Despite some advanced multibacillary (MB) cases still being diagnosed everywhere in Brazil, the great majority of them are early mid borderline (BB) or LL Hansen´s Disease.  I have also seen cases presenting single nodular lesion, located mainly in the buttocks or Achilles tendon, without any infiltration or nerve involvement.  Other patients only present episodes of a few erythema nodosum leprosum (ENL) reaction lesions.

However, one of the great results of household contact examinations and continuous local campaigns in Brazil, is a large number of indeterminate leprosy, as well as borderline leprosy diagnosed before nerve damage, in a stage of evanescent skin patches.  In Rio de Janeiro state for instance, the regional Society of Dermatology (SBD-RJ) has been working with the state program manager to insert skilled professors of dermatology in local campaigns at the peripheral municipalities of the metropolitan region.  Also, at the most prevalent municipalities in the minor cities over the last 3 years.  This is justified by the weakness of the primary health care in these areas and it is not only useful to find new leprosy cases but also to train family health teams and medical residents on dermatology.

In fact this strategy started in 1998 in Rio de Janeiro city and in the beginning of the years 2000, expanded to municipality of Duque de Caxias next to Rio de Janeiro city, where I performed a project funded by the Netherlands Leprosy Relief (NLR) from 2003-2007.  The results can be observed in Graphic 1: the detection rate of Hansen´s Disease in the whole state of Rio de Janeiro shows a 46.8% reduction from 2001 to 2010 and, at the same period, the reduction achieved in Duque de Caxias municipality was 56.35%.  However, this peripheral municipality is presenting now the same detection rate of the whole state at the beginning of the decade.

The fluctuation observed in this municipality could be related to the sporadic but also continuous case finding activities, as the basic care network of Duque de Caxias covers only 30% of its population in addition to management weaknesses.  The decrease in the detection rate of course influenced the current prevalence rate of the state to be less than 1/10,000 inhabitants.  Nevertheless, local case finding activity to allow early diagnosis and interruption of the transmission of the source of infection in the peripheral area, is mandatory in order to sustain the decline.

The state detection rate decrease (Graphic 1) was gradual, without fluctuation in accordance with the epidemiological behaviour of this endemic disease.  So that I believe on its sustainability, if the peripheral and poorest areas continuing receiving efforts to Hansen´s Disease control advocacy.  No less important is the social and economic development of these municipalities.

Maria Leide W. de Oliveira

Medical School-Dermatology Sector/Federal University  of  Rio de Janeiro (UFRJ)

Graphic 1. 

Epidemiology in the Leprosy Mailing List

Ref.:   Epidemiology in the Leprosy Mailing List (LML)
From: M Leide W. de Oliveira, Rio de Janeiro, Brazil

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Dear Dr Noto,

I refers to a previous LML discussion about the relevance of non- epidemiologist participants, focusing on epidemiological and mostly clinical aspects of leprosy.

In my opinion the main usefulness of the LML is the free access from leprosy workers around the world, including who often have first-hand experience in dealing with leprosy.  The subjects brought by them should be considered as sentinel of the real situation of the disease management everywhere.  Contributions from senior leprologists and epidemiologists are always welcome.

Maria Leide W. de Oliveira

Medical School-Dermatology Sector/Federal University of  Rio de Janeiro

No Hypopigmented Lesion, No Nerve Thickening, But Its Leprosy!

Ref.:   No Hypopigmented Lesion, No Nerve Thickening, But Its Leprosy!
From:

1.
H K Kar, New Delhi, India

2.

D Palande, Kurichikuppam, Pondicherry, India

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1.

Dear Dr Noto,

I appreciate to note the comment from Dr Warren on article "No hypo-pigmented lesion, no nerve thickening, but leprosy" by A Singh et al (Indian J Dermatology, 2012.).  There is a great change in clinical presentation of lepromatous (LL) leprosy in India, must be the same in Brazil, the two most leprosy populated countries.  It requires a lot of data generation from the published and unpublished documents for the future leprologists, dermatologists and physician especially for early diagnosis of LL through suspecting clinically and confirming on slit skin smear (SSS) examination.  

For early LL, especially in the stage of early infiltration in the skin without any nerve involvement clinically, only a doctor with sharp clinical acumen can suspect this stage when he/she examines the patient in a natural light and confirm with SSS.  Recently, very unusual presentations of LL have been documented with single nodular lesion, single nerve lesion, and few evanescent ENL lesions.
Our teaching program on leprosy should focus on these aspects to our younger generation medical students in graduate and post graduate level.

Regards,

Dr (Prof.) H K Kar
Dean, PGIMER, Dr R M L Hospital
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

2.

Dear Dr Noto,

I very much appreciate and would like to repeat what Dr. Grace has written [LML May 28^th, 2012] especially the sentence:-

“This is a timely reminder and one wonders how many of these patients are treated for some other disease or just not treated till the leprosy is definite and that often means that deformity or disability will result.  Also the patients most likely to have this type of lesion are those at lepromatous end of spectrum and so most likely to transmit the disease to their contacts; even if they are not manifesting obvious lesions”.

Dinkar D. Palande

No Hypopigmented Lesion, No Nerve Thickening, But Its Leprosy!

Ref.:   No Hypopigmented Lesion, No Nerve Thickening, But Its Leprosy!
From: G Warren, Sydney, Australia

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Dear Dr Noto.,

Thank you very much to Ms Nathalie Koumans for her message [LML may 22nd, 2012].  I was very pleased to open the new list posted from Infoleps of leprosy articles, available on line.  This article was of particular interest.
“No Hypopigmented Lesion, No Nerve Thickening, But Its Leprosy!”
Ashish Singh, S Ambujam, and N S Pradeep Kumar
Indian J Dermatol. 2012 Jan-Feb; 57(1): 73–74.
doi:  10.4103/0019-5154.92689

This is a very timely article based on the general acceptance of the W.H.O. definition that a patient with leprosy must have a skin patch with a definite loss of sensation.  The writers describe a very common problem in many countries where the pinkish ENL spot may become and go and may ulcerate and become infected and may even be uncomfortable but, the quickest way of checking the diagnosis of leprosy is often by a slit skin smear.  Yes, I am afraid that good reliable technicians able to do a good smear are becoming more rare, but It is important that general dermatologists and physicians need to remember that early Lepromatous leprosy may have very vague lesions or fluctuating ones (as ENL does) that have no loss of pain or obvious abnormality in touch.

Yes, “what we do not think about we will never diagnose” and in endemic countries we need to still be aware that  leprosy is present but, we will not diagnose it if we do not look for it.

Having worked in eastern Asia for many years I am very familiar with this early LL type of leprosy in which there are no obvious lesions for many years though if one palpates carefully one realises that there is some infiltration.  If the positive diagnosis is made at that early stage then there is often no real problems managing reaction and recovery does occur relatively rapidly without deformity or disability.  

I vividly remember one middle aged Chinese woman whose face was generally infiltrated but, she had no obvious edges and no definite lesion.   However on careful examination one could feel the infiltration and appreciate that the upper lip was not as infiltrated as the rest of the face.  The diagnosis was made because a nodule on her arm was biopsied!   In follow up we found slit skin smears with bacteriological index (BI) of 3+ and 4+ in every site where we examined even if there was no sign of a definite lesion.

This is a timely reminder and one wonders how many of these patients are treated for some other disease or just not treated till the leprosy is definite and that often means that deformity or disability will result.  Also the patients most likely to have this type of lesion are those at lepromatous end of spectrum and so most likely to transmit the disease to their contacts; even if they are not manifesting obvious lesions.

May we really look for these cases and early treatment will help to keep the numbers of new cases down.

Yours sincerely,

Grace Warren
Previously Med Superintendent of  Hong Kong leprosarium 1959-1975. 
Adviser in Leprosy  and Reconstructive Surgery for the Leprosy Mission Asia 1975-1995.

Leprosy mailing list languages

Ref.:   Leprosy mailing list languages
From: S Noto, Genoa, Italy

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Dear All,

The leprosy mailing list (LML) is run on a voluntary basis with the contribution of all [“writers and readers”].  Its main objectives are sharing of knowledge about leprosy and facilitate participation of all staff involved in the disease.  Anybody is free to contribute and his or her opinions are respected. 

The main language used in the LML is English.  However already in the past it has been pointed out that this should not impede people to express themselves.  Probably there is a need to stress it again.  Papers and documents relevant to leprosy but, in languages different from English will be circulated in the LML and, filed on the LML Archives.  This will make them freely available online. 

A limit to the above expressed idea is that the LML editors or somebody for them should take responsibility that they understand the document and are able of preventing publication of irrelevant or inappropriate matters.

Best regards,

S. Deepak, B Naafs, S Noto, P A M Schreuder

Infoleps Choice of new (e) publications on leprosy

Ref.:   Infoleps Choice of new (e) publications on leprosy
From: N Koumans, Amsterdam, The Netherlands

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Dear Salvatore,

Thank you very much for circulating on the leprosy mailing list a selection of new publications on leprosy (see attachment).  Please contact me for full text versions.  Do you have publications on leprosy to share?  Please let me know!

With kind regards,

Nathalie Koumans

temporary Information Officer

INFOLEP

Postbus / P.O. Box 95005

1090 HA Amsterdam

The Netherlands

Tel: +31 20 5950530

Mob:

E-mail: InfoLep@Leprastichting.NL

Web: www.leprosy-information.org

BIKASH Enablement Newsletter

Ref.:   BIKASH Enablement Newsletter
From: G Gurung, Pokhara, Nepal

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Dear Dr. Salvatore Noto,

Greetings from Nepal!  Kindly, circulate the first BIKASH Enablement Newsletter through your very popular leprosy mailing list.

Many thanks.

With our best wishes,

Gopal Gurung

Program Manager

BIKASH Nepal

Pokhara

Nepal

P: 00977 61 430562

F: 00977 61 430940

W: www.bikashnepal.org.np

Dr. P. K. Gopal Receiving Padma Shri Award

Ref.:   (see Dr. P. K. Gopal Receiving Padma Shri Award

From: U Thakar, Mumbai, India

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Dear Dr. Salvatore Noto,

It is our great pleasure to inform you that, Dr. P. K. Gopal, President, IDEA (Integration, Dignity & Economic Advancement of people affected by leprosy) India and Chairman, National Forum, has been conferred the most prestigious PADMA SHRI AWARD on 22.3.2012 at the hands of the President of India.

Attaching herewith his biographical sketch and photograph while receiving PADMA SHRI AWARD.

We request you to upload this news on your mailing.

Thanks and regards.

Yours,

Mr. Uday Thakar, Mr. Venu Gopal and Mr. Bhimrao Madhale

Advisor, Trustee, Trustee

National Forum