Tuesday, December 27, 2011

Give the leprosy workers a voice

Leprosy Mailing List – December 26th, 2011
Ref.:    Give the leprosy workers a voice
From: P A M Schreuder, Maastricht, The Netherlands

Dear Salvatore,
It is Christmas time. Let’s us reconsider our differences. The final goal of everyone is a world without leprosy.  The first step is elimination, the absence of a disease from an area; the second step will be eradication, the disappearance of a disease from the entire world (like what happened with smallpox).  There are not that many tools, interventions, available to reach that final goal.  Too little is known about transmission and the step from contamination to infection to disease.  Yes, leprosy has (almost) disappeared from the developed world.  Why transmission had halted we do not know, but it is assumed that improved living conditions (hygiene, living space, nutrition, etc.) have played an important role (but what and how, we do not know).  BCG is widely applied in the world and certainly has caused a dent in the incidence of leprosy.  Prophylactic treatment of contacts is still in the research stage, but very promising.  There are no tests yet which can predict if a person infected will actually develop the disease.  Everybody agrees with the present strategy of early (soon after the appearance of the disease) diagnosis and prompt treatment with MDT.  If this indeed will interrupt the transmission cycle is not clear.  To be able to apply a strategy, a well-organized basic health service, supported by a well-defined system of training, supervision and referral services, is needed.  We do not only want a patient to become rapidly non-infectious, we also want the patient to be free and stayed free of nerve function impairments.  And if impairments develop to prevent further worsening, and further disabilities and handicaps.  The recent WHO Global Strategies spell this out very clearly (WHO Global Strategy for Further Reducing the Leprosy Burden and Sustaining Leprosy Control Activities 2006 – 2010 and the Enhanced Global Strategy for Further Reducing the Disease Burden due to Leprosy 2011 – 2015).
The WHO elimination policy, although based on a faulty definition and lacking any scientific justification, has been highly successful in gathering political support and organizing leprosy control programmes in many countries.  The policy based on early case finding through active and passive case detection, MDT treatment, and organizing and integrating the basic health services resulted in many new patients being diagnosed and a rapid decline in known prevalence.  If the leprosy countries would implement WHO Global Strategies, including POD and setting up rehabilitation services, and if new approaches for leprosy control in less endemic areas, would be developed, the leprosy control situation would continue to improve.
However, as soon as the WHO declared its elimination policy it became hijacked by health authorities and politicians.  Its target “setting of a prevalence rate of less than 1 per 10,000” suggested that by reaching this target the leprosy reproduction rate would become less than 1 and as such leprosy would further decline and eventually disappear from an area.  Once more, there was no scientific support for these suppositions and the “elimination of leprosy”, the disappearance of leprosy from previously endemic areas, has not materialized so far.  What is even more, if the original definition of a leprosy case, the duration of treatment and the duration on the patient register had not changed, than many countries, where leprosy has been so-called eliminated, would not even have reached a target of less than 1 per 10,000  by now.  Changes of case definitions, ascertainment procedures, and diagnostic and registration conventions have impacted more on reductions in prevalence (1) than a decline in incidence in many countries.
Because the quality and coverage of control programmes had increased remarkably, many new patients were diagnosed and successfully completed treatment.  Still the postulated decline in detection rates in many endemic countries did not materialize even after the so-called elimination target was reached.  Even though new leprosy patients continued to present themselves, some countries started to dismantle the leprosy services leading to extra suffering of patients (late diagnosis, difficulties in finding treatment).  Why should we be apologetic about this?
Instead of accepting that the present policy did not necessarily resulted in a rapid decline in detection rates and that the target setting of a prevalence rate of 1 per 10,000 did not show to reflect the real leprosy situation in the field, not the target and prevalence were discarded but the detection figures and the leprosy workers were made the culprit.  Administrative steps were taken in several endemic countries to hide the real situation that many more new patients were found than was politically convenient.  Many authors (and many leprosy workers), like Paul Fine in Leprosy Review, have pointed this out, but with as only result that the proponents of this misguided target setting have become even more intransigent.  The video message at the Brazilian Leprosy Congress is a prime example of this, blaming the highly dedicated and hardworking leprosy workers, instead of realizing that the world has gone on and that WHO has set new policies and strategies.  That is why we want to pay so much attention to this in the LML.
Yours sincerely,

  1. Anjan Gosh. A Health Policy Report “How could changes of case definitions, ascertainment procedures, and diagnostic and registration conventions have impacted on reductions in the prevalence of leprosy in India, reported over the last decade (taking the state of Jharkland as a case study)? LSHTM, 2008

International training announcement

Leprosy Mailing List – December 26th, 2011
Ref.:    International training announcement
From: G Gurung, Pokhara, Nepal

Dear Dr Salvatore,
Greetings from Nepal!  This is just a quick check if our international training announcements have been forwarded to all LML readers.  I am attaching those files for your convenience.
Many thanks for your support,
Wishing you and all LML readers a Merry Christmas and Happy New Year 2012!
Gopal Gurung
Program Manager

P: 00977 61 430562
F: 00977 61 430940

Training courses
4: Leprosy Training for Medical Doctors: 15-20 April 2012

Christmas [Portuguese]

Leprosy Mailing List – December 26th, 2011
Ref.:    Christmas [Portuguese]
W Nogueira, SP, Brazil

Meus queridos amigos,
Já faz alguns meses que estou para mandar notícias a todos, mas alguns fatos muito tristes que tomei conhecimento ao longo deste ano me fizeram aguardar uma boa oportunidade, e nada mais favorável que o bom astral das Festas de Natal e Ano Novo para comunicar a todos que continuo por aqui, cada dia um pouco mais forte e com muita esperança de dias ainda  melhores.  Acabei de realizar todos os exames e mais uma vez foram todos negativos e os colegas médicos que me acompanham pediram para retornar para controle  em seis meses, aumentando um pouquinho mais o espaço dos retornos.  Neste ano, eu mesmo constatei que estou bem melhor fisicamente.  A queles que me visitaram no Hospital Santa Catarina e se assustaram com os 30 kilos que tinha perdido podem se tranquilizar porque já recuperei 25 e nem quero engordar mais pra não voltar a ter sobrepeso.  
Este também foi um ano mais produtivo, e junto com uma amiga, Assistente Social do Espírito Santo, escrevemos um livro – “A Fundação Paulista Contra a Hanseníase e o processo de transformação dos antigos hospitais – colônia do Estado de São Paulo”, editado por esta mesma Fundação onde voluntariamente ainda mantenho algumas atividades de trabalho.  Neste livro, além de registrar as mudanças institucionais nas últimas décadas no controle desta endemia, apresentamos os trabalhos que estamos desenvolvendo nesta Fundação para o resgate da cidadania daqueles antigos doentes que foram isolados compulsoriamente no passado.  Se alguém que receber este e-mail ainda não recebeu este livro e tem interesse em conhecer este trabalho, basta mandar o endereço residencial para o e-mail << contato@fundacaohanseniase.org.br >> que eu enviarei pelo correio.  
Para finalizar desejo a todos um Natal com muita paz e alegria e um Ano Novo sempre muito melhor que aquele que se encerra.
Um grande abraço
Wagner Nogueira 

What should be the correct strategy to diminishing the burden of leprosy?

Leprosy Mailing List – December 24th, 2011
Ref.:    What should be the correct strategy to diminishing the burden of leprosy?
From: J. A. Barreto, Bauru, SP, Brazil

Dear Salvatore,                                                                 
Concerning the letters of Dr N. Cardona Castro and Dr W Nogueira [Dec 8th and Dec 19th, 2011], we must remember that the decision to eliminate leprosy was based on the fact that MDT cured leprosy patients, or at least that the release from treatment is higher after 24 doses of MDT-MB than after 10 years of dapsone monotherapy.  Unfortunately, this strategy does not act to prevent - infected and thus susceptible peoples to develop leprosy.  There is no vaccine, incubation time is long and asymptomatic, and the people affected are usually poor and have a low cultural status. 
In my PhD thesis, in 2008, I reevaluated lepromatous leprosy patients treated with MDT 24 doses, as well as their household contacts in the state of Santa Catarina, were leprosy was eliminated since 1997.  With a median time interval of 11 years after treatment, more than 90% of them did not have clinical evidences of disease activity, though the presence of M. leprae in environment did not change.  Once I found 6 new cases among 187 contacts evaluated.  Also, IgM for PGL1 and or the detection of M. leprae DNA in nasal mucosa were found in 20 to 30% from contacts of healed patients.  The disease development rate among household contacts was the same as observed by Doull in the Phillipines 80 years ago, i.e., more than 6 cases per year per 1000 exposed, i.e., even with 100% of BCG vaccination in the household contacts, susceptible individuals developed the disease as in the past.
Why this happened?  Because the diagnosis leprosy is still centralized in reference centers, and thus the access to it is difficult.  A fact that is typical for areas where leprosy is not a public health problem, which explains the gap in time of more than 8 years between the diagnosis of leprosy in the contact and the diagnosis of the index case (lepromatous).  What should be the correct strategy to diminishing the burden of leprosy?
We, certainly, must keep the goal of elimination, since this put leprosy in focus. The following steps must be reinforced:
First: recognition that the disease is a problem.  This must be linked to several other factors, from which bacilli are only one.  The Brazilian government surely diminished poverty and improved education, but eradication of misery is a long journey to go.
Second: teaching leprosy in Universities, since most of health professionals (like me in the past) think it does not exist, or that it is rare.  Many are afraid to became sick too when attending the patients due to ignorance about the disease.
Finally, improvement of the capability of health professionals who are in the field, with a strategy of in service training, like DAHW is doing in the states of Mato Grosso and Mato Grosso do Sul.

J. A. Barreto, Leprologist and Dermatologist, PhD, Bauru, Brazil

Dr A Ghosh’s contribution

Leprosy Mailing List – December 24th, 2011
Ref.:    Dr A Ghosh’s contribution. 
From: H K Kar, New Delhi, India

Dear Dr Noto,
This is my first letter after our meet in Brazil for Brazil Congress and ILA regional leprosy congress for Americans.  However, I was keenly going through all your mails.  
I am not agreeing with many aspects mailed by A Ghosh [LML Dec. 17th, 2011].  Introduction of MDT by WHO has a tremendous impact on reduction of case load in the world.  The word elimination no doubt has created a false impression of eradication particularly among the politicians and non-medical administrators.  As leprologists it is our duty to clarify ourselves first and clear the doubts of nonmedical administrators and politicians the difference between eradication and elimination.  
Leprosy is neither  highly infectious nor M. leprae remains alive outside the human being for more than few days as stated by A Ghosh.  No doubt, a few pockets (municipalities, districts) in all endemic countries are having  hidden cases of leprosy which needs to be detected at the earliest by certain active mechanism like conducting SKIN CAMPS periodically after adequate IEC programme for voluntary reporting in the camp for early detections and treatment.  Due to long incubation period as well as persistence some hidden untreated cases, new cases of leprosy continue to surface for some more years.  As rightly targeted by WHO for reduction of deformities by 35 % depends on how early we are detecting our new cases. Increase number of new cases among children in certain parts of the glove is not a healthy sign. We all have to be serious on intra familial and extra-familial contact tracing and if possible regular school survey for early detection of cases within the existing setup of integrated programme.  We must be optimistic and work hard towards for ultimate eradication.


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

Dr A Ghosh’s contribution. Community Dermatology

Leprosy Mailing List – December 20th, 2011
Ref.:    Dr A Ghosh’s contribution. Community Dermatology
From: T. Ryan, Oxford, UK

Dear Salvatore,
Anjan Ghosh [LML Dec. 17th 2011] has made a lucid and informative contribution which everyone with an interest in the future of leprosy should read.  I am disappointed that there is no mention and discussion of the contribution the profession of dermatology should make to the future.  Of course the majority of Dermatologists in private practice do not want to be part of an outreach of a new elimination programme.  However all will be willing to be part of its advocacy and that could be helpful. 
What the old brigade and that includes Ghosh's supervisors, do not realise is that there is a developing branch of Dermatology named Community Dermatology.  Ryan Tj (2011) The International Society of Dermatology's Task force for Skin care for ALL: Community Dermatology.  International Journal of Dermatology 50: 548-551.  Nine articles under this heading follow. There is a CD with 41 accounts of successful practice.  Leprosy is included as a topic in both.  
Leprosy is predominantly a skin disease and unless those who supervise the future have an expectation that Dermatology will make a significant contribution in the future and invite them to the forums that discuss the future it will be difficult for Community Dermatology to plan to be part of that future.  I recognise that there are Dermatologists playing a leadership role but sadly such involvement most frequently sees them drop the title of Dermatologist.

Terence Ryan
Email: userry282(at)aol.com

What strategy should be applied for leprosy control?

Leprosy Mailing List – December 20th, 2011
Ref.:   What strategy should be applied for leprosy control?  
V. Pannikar, India

Dear Dr Noto,
I am fascinated by the on-going discussion on the Brazilian leprosy programme.  I have always admired Brazil for their honesty in providing us with the "true" leprosy situation in the country.  They are ready to accept their shortcomings gracefully and correct them.  The country is vast; the population still on the move, the infrastructure is still trying to reach the unreached areas/populations.
If anybody knows the leprosy situation well, it is the Brazilian scientists, dermatologists and experts, who have dedicated their lives for controlling this disease.  In doing so they have contributed richly to the global fight against leprosy and improved our scientific knowledge in many fields.  In this I will particularly single out the dermatologists and their organizations, who unlike in other countries, have been at the front of fight against leprosy.  In my opinion, Brazil is one of the rare countries where leprosy work is highly respected; taught and young people are still willing to dedicate their lives for.
Regarding the issue of what strategy should be applied for leprosy control?  There is no correct answer, elimination had its own goal and purpose and now we are moving to next steps.  This does not mean that elimination strategy was wrong, if properly understood, in the context of period and situation in 1990's, it was the best.  Today in the second decade of 2000's, the context has changed and new challenges are appearing.  We are seriously looking at other issues like prevention of disabilities (PoD), rehabilitation, stigma etc because we were able to reduce the burden of leprosy prevalence, reduce the cost MDT - free now.  To me the strategies evolved during the last 2-3 decades were a continuum, one benefitting from the previous and still retaining essentials.
The ultimate choice must remain with the national programmes, as long as the essentials are followed, things will work out for the best.  I would fully support the right of the programme to choose and we must support their efforts.
With kind regards,
V. Pannikar

Brazilian Hansen's Disease Congress and "Elimination" Goal

Leprosy Mailing List – December 19th, 2011
Ref.:    Brazilian Hansen's Disease Congress and "Elimination" Goal
From: W Nogueira, S Paulo, Brazil

Dear Salvatore,

I am the member of the Brasilian Society of Hansenology (SBH) who did not agree with the video-message of the Ministry of Health [see letter of Dra. Maria Leide, LML Dec. 9th, 2011] and I requested, during the SBH assembly, to register in the record of the proceedings my disagreement.  Regrettably the meeting was against, stating that this was not the moment to set itself against the Ministry of Health, with which I did not agree.  I am also a member of the board of Directors of the Fundação Paulista Contra a Hanseníase and, in our meeting after the congress, which took place on 9-12-2011 it was decided that the Foundation will send a letter declaring itself against what was declared at the SBH congress about: "the wrong strategies implemented by the country the past decades".  As soon as this letter is written and sent to the Ministry of Health and the SBH, I will send you a copy.

Wagner Nogueira

<< “Prezado Salvatore,

Eu sou este membro desta sociedade que não concordou com o discurso e solicitei, na assembleia da SBH, um registro em Ata do meu desagrado.  Lamentavelmente a Sociedade foi contra, afirmando que não era momento de se insdispor com o Ministerio da Saúde, com o que não concordei.  Faço parte também da diretoria da Fundação Paulista Contra a Hanseníase e, em nossa reunião pós congresso, realizada em 9/12/2011 ficou decidido que a Fundação vai enviar uma carta manifestando-se contraria ao que foi declarado neste congresso sobre "as estratégias equivocadas adotadas pelo país nas últimas décadas".  Tão logo esta carta seja escrita e encaminhada para o Ministério da Saúde e Sociedade Brasileira de Hansenologia, envio uma copia para você.


Wagner Nogueira”>>

What can we do Dr Noto?

Leprosy Mailing List – December 19th, 2011
Ref.:    What can we do Dr Noto?
From: S. Noto, Genoa, Italy

Dear Dr Nora Cardona Castro,
Thank you very much for your message in LML dated Dec. 8th, 2011 about ”Why Brazil is doing this?” and for sharing important information about the leprosy situation in Bolivia.  At the end of your message you kindly asked:- << ”What can we do Dr Noto?” >>.
I think we should carry out anti-leprosy activities using the proper tools.  If we use the proper tools we can only do better.  But probably your important question is too big for me and others have to answer.  I can try to understand who is advising Brazil in doing the right thing with the wrong tools and why?  After this, one may discuss with these persons and get explanations on why it should be “elimination” instead of “control”? Why registered point prevalence rate instead of incidence related indicators? And what will change after we reach the 1 in 10,000 benchmark?
The more I think about the National Congress of the Brasilian Society of Hansenology and the Regional Congress of the International Leprosy Association held in Maceio’, Brazil, from the 23 to 26 November 2011,the more hypotheses I get.  The congress days were excellent.  I met many friends and colleagues all discussing about leprosy, its complexity, its sequelae and how to address the many unresolved questions.  None, among the great number of health workers present was talking about the so called “elimination strategy”, with two exceptions.   Just at the welcome session two speakers, mentioned this strategy.  Might it be (hypothesis) that somebody from Brazil or from outside is advising the use of this strategy against the opinion of most people working in this field?
If that were that case it is a nightmare, we are back to square one.  There has been no learning from the past.  Should wait we again for somebody like Dr Sansarricq who honestly reported:  << “ … Noteworthy, too, is that the elimination initiative was recommended by the WHO Executive Board and the World Health Assembly without a WHO Expert Committee meeting, Study Group, or other preparatory step.  It may have been felt that a technical meeting was likely to express some reservations about the elimination concept …” > >?
Not to mention about who is going to organize the next International Leprosy Congress about a disease that was already eliminated in the year 2000, then with a final push it was eliminated again in the year 2005, then the same disease went into the post elimination era [incredible, the post-elimination era!] and, then Brazil starts all over again and, then India pays money to “volunteer” health workers per each leprosy patient detected.
It is not a matter of words, it is a matter of tools or weapons in the armamentarium against leprosy, we should use the right ones.  It is like we were using the wrong drugs and giving away MDT.  If instead, we use the right tools we can only do better.
Best regards,
S. Noto

“Why Brazil is doing this?”

Leprosy Mailing List – December 17th, 2011

Ref.:    “Why Brazil is doing this?”
FromA Ghosh, London, UK

Dear Salvatore,
Thank you for your LML message “Why Brazil is doing this?” dated December 4th, 2011.  It is an interesting area of discussion.  In fact my dissertation for my Master in Public Health at the London School of Hygiene and Public Health in 2008 was about this.  The title of the dissertation was: -  
“A Health Policy Report - How could changes of case definitions, ascertainment procedures, and diagnostic and registration conventions have impacted on reductions in
the prevalence of leprosy in India, reported over the last decade (taking the state of Jharkhand as a case study)?”.
Herewith are my conclusions (and in attachment the full paper).  Thank you for circulating it on the leprosy mailing list.  Any comment will be appreciated.
Best regards.
Anjan Ghosh
Specialty Registrar Public Health
Department of Health Services Research & Policy
London School of Hygiene & Tropical Medicine
15-17 Tavistock Place
London WC1H 9SH

<< 7.1    Conclusions
Declaring a disease eliminated from a country has very serious implications.  Despite more than 20 years of multi-drug therapy (MDT), leprosy has not been eradicated.  Leprosy patients are highly infectious and M. leprae can remain viable outside the human host for many months.  The mean incubation period of lepromatous disease is 10 years.  These factors make it difficult to completely eradicate the disease and there is no evidence that the global initiative has lead to the disappearance of infection or disease from any population.
Perhaps we are failing to understand some important aspect of the disease’s natural history.  With elimination declared, resources are becoming scarce for the continued efforts necessary to keep this enigmatic disease at bay.  
Integration has resulted in the loss of skilled and experienced leprosy workers and the lack of training to general health staff has further compounded the situation.  Cessation of active case detection will continue to contribute to a rise in hidden cases.  In the absence of effective IEC, campaigning and public awareness initiatives, voluntary reporting will not be effective in new case detection.
Social stigma in relation to leprosy is ingrained in society.  Fear of social ostracism and discrimination discourage patients from accessing services or even being diagnosed.  Socio-economic rehabilitation of leprosy cases is greatly hampered by this.  Ignoring the reality of the problem will not make it go away.  Declarations of elimination on paper do not magically rid a country of a disease.  Much to the contrary, it is possible the leprosy will re-emerge as a major health issue unless it is addressed according to the ground realities. >>

Request of address of Doctor with experience in leprosy in Cuba

Leprosy Mailing List – December 15th, 2011

Ref.:   Request of address of Doctor with experience in leprosy in Cuba
From: S. Noto, Genoa, Italy

Dear All,
We have here in Genoa a patient of leprosy that has been treated for ENL reaction.  He is going back home to “Jsla del la Juventud”, Cuba.  I am looking for the address or contact numbers of a Doctor with experience in leprosy in Cuba to whom referring the patient.
Thank you very much in advance,
Best regards,

S. Noto


Leprosy Mailing List – December 14th, 2011

Ref.:   Brazil
FromJ A Barreto, Bauru, SP, Brazil

Dear Dr Noto,
The last International Leprosy Congress, in Maceio’, Brazil, was an important moment to discuss the question of leprosy in America, as well as in the World.  For WHO, nowadays, we are the last country where leprosy was not "eliminated", and though we all know that this is not true, Brazil became in a bad situation: are we so incompetent, more than all other countries, like Ethiopia, Sudan, etc?
The fact is only one, and WHO should change the way how this issue has being understood.  Having an elimination target is good, and important, at least once the detection rate decreases when leprosy is not in focus, and not like what happened after 2005 in Brazil (The reporting was only on ¾ of the year).  Nevertheless, to reach elimination, many efforts must be done, and the foolish strategy, which is in progress today, i.e., the making up of statistics, will have a high price. 
Monitoring of “elimination”, as well as the quality of assistance, is also extremely important, and since 2005 nothing was done in Brazil about this.  When I went to the state of Rio Grande do Sul, in 2003 and 2005, as monitor of Leprosy Elimination Monitoring, I observed that the goal of elimination, achieved in 1997 in that state, was only operational: an extremely centralized model of leprosy assistance, i.e., made by dermatologists in regional references, without evaluation of household contacts, associated with a high degree of stigma and prejudice.  This led to the progressive decreasing from the detection rate due to gradual retirement of these professionals, whose were not substituted.  Today, like the other 2 states that also achieved elimination (on paper), i.e., São Paulo and Santa Catarina, the rule is late diagnosis in referral centers, like the same problem reported by Dra. Nora Cardona Castro from Colombia. 
I had published a paper about the leprosy cases diagnosed in our Institute from 2003 to 2007, with the profile of leprosy patients from the state of São Paulo.  Almost two thirds had grade of disability higher than zero, and one third had grade 2; median time interval from the start of symptoms to diagnosis in a referral center was one year.  Half of the patients came to our services without the suspicion of leprosy, i.e., among the other dermatologic diseases, since we have a Residence in  Dermatology.
Today, like Dra. Nora, we are diagnosing 1 new case almost every day in our routine. During the last Skin Cancer Campaign in our city, fifteen days ago,  2 new cases were found, one of them was an advanced lepromatous case, with several lepromas.  Finally, my opinion is that having an “elimination” target is important, but epidemiological vigilance must be kept, as well as monitoring the achievement, like what we are doing now.
Jaison A. Barreto
Instituto Lauro de Souza Lima
Bauru, SP, Brazil

CALL FOR PAPERS - For a special issue of Leprosy Review on Chemotherapy

Leprosy Mailing List – December 13th, 2011

Ref.:   CALL FOR PAPERS - For a special issue of Leprosy Review on Chemotherapy
From: I Allen, Colchester, Essex, UK

Dear Salvatore,
Would you be kind enough to put the attached  CALL FOR PAPERS on the Leprosy Mailing List please?
Thanks very much
All best wishes

Mrs. Irene Allen
Assistant Editor
Leprosy Review
28 Middleborough
Essex CO1 1TG
Tel: 01206 216730
Fax: 01206 762151

28th Biennial Conference of Indian Association of Leprologists

Leprosy Mailing List – December 13th, 2011

Ref.:    28th Biennial Conference of Indian Association of Leprologists
From: Swapan K Samanta, West Bengal, India

Dear Dr Noto,

Thank you very much for your excellent mailing list.  Please be kind enough to circulate this attached Brochure of the ensuing 28th Biennial Conference of Indian Association of Leprologists to be held in Mumbai, India on 27, 28 & 29th January, 2012 and also inform the interested participants to have a look on our Website:www.indianleprologists.org for any last minute information.

Looking forward for your urgent necessary action.
Swapan K Samanta

Dr Swapan Kumar Samanta, MBBS (Hons), MS, CCEH(ICEH,London), West Bengal Medical Education Service
Hony. Secretary, Indian Association of Leprologists
Hony. General Secretary, Association of Community Ophthalmologists of India
Councillor, SAARC Academy of Ophthalmology
Associate Prof. & Visiting Eye Surgeon
Dept. of Ophthalmology, Calcutta National Medical College ,Kolkata 700014, West  Bengal
Visiting Eye Surgeon,  Brandt Ocular Leprosy Clinic
Haldia Lions Eye Hospital, Haldia Port City, West Bengal, India)
Mailing Address:
657 Abasbari, TAMLUK,Dist. Purva Medinipore, West Bengal, PIN : 721636
Tel: 03228266101, 09434023759, Email : swapansamanta53(at)gmail.com
Attachments: Brochure and Registration form

Why Brazil is doing this?

Leprosy Mailing List – December 12th, 2011
Ref.:   Why Brazil is doing this?
From: W H van Brakel, Amsterdam, Netherlands

Dear Salvatore,
I would like to add that I agree for 100% with the view expressed so well by Prof. Cairns Smith (LML, Dec. 10th, 2011)!
With best wishes,

Wim van Brakel
Wim H. van Brakel, MD MSc PhD
Head, Leprosy Unit
Royal Tropical Institute (KIT)

Brazilian Hansen’s disease Congress and “Elimination” Goal

Leprosy Mailing List – December 12th, 2011

Ref:     Brazilian Hansen’s disease Congress and “Elimination” Goal
From:  D D, Palande, Pondicherry, India

Dear Salvatore,
I find this letter [M L Wan-Del-Rey de Oliveira, LML Dec. 9th, 2011] and the action proposed and taken very interesting and wonder how many of us in India would strongly advocate such an approach.  My appreciation and thanks Dr Maria Leide for this way of approach and its pragmatism. 
Dinkar D. Palande

Why Brazil is doing this?

Leprosy Mailing List – December 10th, 2011
Ref.:   Why Brazil is doing this?
W C S Smith, Aberdeen, Scotland, UK

Dear Salvatore,
Can I respond to your message (LML Dec. 4th, 2011) from a personal perspective?  Much of what you say about incidence, prevalence and elimination is correct, and is re-visiting old debates.  I am very aware of the debates and misgivings about the term elimination.  Correctly the ‘elimination strategy’ was defined in the World Health Assembly 1991 resolution as elimination as a public health problem to a registered prevalence of less than 1 in 10,000 population at a global level by the year 2000.  The elimination strategy was highly successful in providing a focus for leprosy and in securing political and financial commitment leading to a dramatic reduction in registered prevalence by the end of 2000.  Since then the global strategies have focused more on reducing the burden of disease, new case detection, improving quality of leprosy services and reducing disabilities. 
Public health strategies and policies with targets are developed, based on many factors as well as the epidemiology.  Many of the weaknesses of prevalence you have mentioned also apply to new case detection which limit its validity as an indicator of ‘incidence’.  Prevalence can be a useful indicator of treatment workload for programme managers.  Now that treatment duration is 6 or 12 months, the prevalence approximates to new case detection.  Indeed where the duration of MDT is fixed, and it is efficiently delivered with good completion rates, new case detection is the main determinant of prevalence according to the mathematic formula. 
As to the situation in Brazil – this is a country that, according to the Weekly Epidemiological Record, is in the rather unique position of not yet achieving a registered prevalence below 1 in 10,000.  If the government wants to develop an ‘elimination strategy’ that would improve the quality and coverage of the national programme that should be welcomed – the name is of less importance and I am very aware of the problems with that word.  If the multidrug therapy (MDT) programme in Brazil is efficient (the prevalence/new case detection ratio is less one in Brazil which suggests the MDT programme is efficient) then the only way to reduce registered prevalence will be by reducing new case detection.  I would hope that the strategy would also include the key components of the WHO ‘Enhanced Global Strategy’ which includes a focus on new case detection, reduction in disabilities, participation of people affected by leprosy, and addresses issues of human rights and discrimination.  The heart of the issue is not the title but whether this policy is going to have a positive effect on the health and wellbeing of people affected by leprosy?  If yes, then we should work together to support the efforts of the Brazilian leprosy programme.
With best wishes,
W Cairns S Smith OBE, MD, MPH, PhD
Emeritus Professor of Public Health,
School of Medicine and Dentistry,
University of Aberdeen,
Polwarth Building,
Aberdeen AB25 2ZD,
Scotland, UK
Telephone - (44) 1224 437266
Email: w.c.s.smith(at)abdn.ac.uk

Brazilian Hansen’s Disease Congress and “Elimination” Goal

Leprosy Mailing List – December 9th, 2011
Ref:     Brazilian Hansen’s Disease Congress and “Elimination” Goal
From:  M L Wan-Del-Rey de Oliveira, Rio de Janeiro, Brazil

Dear Salvatore,
To the surprise of all foreign (and Brazilian) hansenologists invited for the recent Brazilian Hansen´s Disease Congress the video-message from Ministry of Health (MOH) reintroduced and emphasized the old elimination goal based on the period prevalence rate of the disease.  Such decision was not discussed with the Brazilian hansenologists.
In fact, this elimination goal is an anachronism after the consensus of the most important hansenologists worldwide, regarding the new focus on case detection and grade 2 of physical disability among new cases (WHO Global Strategy for Further Reducing the Leprosy Burden and Sustaining Leprosy Control Activities 2006 – 2010 and the Enhanced Global Strategy for Further Reducing the Disease Burden due to Leprosy 2011 – 2015).  But for the Brazilian technicians the most provocative declaration showed in the same video was “Brazil did not eliminate leprosy due to incorrect strategies done in the recent decades”.
During the Assembly of Hansenology Society at the congress, one member manifested the need of a note from the Society, against such type of communication.  But another said that this kind of speech is nothing new among new managers and politicians referring to previous administrations.  So the conclusion was that we must be complacent with this.
Of course, the responsible for this video-message knows that this non-achievement of the elimination goal in Brazil was related to the fact that the new cases comprise a number so high that it is impossible to have less than one per 10,000 inhabitants up to now.  But it also can be neutralized if not all new cases detected during the year be included or if no priority for cases detection was done.
The strategies triggered by MOH/Brazil, since the MDT implementation in 1986 was the same: early diagnosis, promptly MDT treatment, contacts surveillance and the reinforcement of decentralizing through the Primary Health Care/SUS.  Therefore, the results depend upon the effectiveness of these services in performing these actions.  It is also influenced by the improvement of economic and social situation of the poorest and most endemic regions.
Recently, MOH announced the funds transference to the 160 most endemic municipalities.  I want to remind this MOH representative that the same strategy was done in 1997/98 under his previous direction, comprising 280 most endemic municipalities.  I had a high regard of him at that time, because Tuberculosis, Dengue and Malaria (also neglected diseases) received a budget for this program.  So we presented a plan to him asking five millions to do the same for Hansen´s Disease and he so authorized.  Later this plan was given greater potential by the following plan with the participation of Novartis and CONASEMS (Council of Municipal Secretariat of Health) in 1998-2002.
The technicians presenting at the Maceió Congress know very well the field situation of Hansen´s Disease, as well as the partners in the field of Hansen’s Disease Control like universities, state Foundations and ILEP members working in Brazil.  Many scientific presentations corroborate that the later strategies are helping in controlling the disease and the decrease observed in a country was a result of their continuous and intensive work.  And it is in accordance with the disease behavior and dependent of the quality of actions performance in a Brazilian SUS scenario.  Many presentations at the Congress showed that the strategic spotlight on child rate and household contacts examination results in a better disease surveillance in the field.
There are many dedicated technicians who should be stimulated to continuing their work in order to reduce and further “eliminate” the Hansen´s Disease transmission focus.  MORHAN could also collaborate with this doing a real social control at municipal level.  The many young doctors, nurses, physiotherapist, social assistants and basic, social and operational researchers among others at the Congress bring a comfortable assurance  that the strategic spotlight on child rate and household contacts examination aggregated all these people in the common objective of a world without Hansen’s Disease.  This is most important than any ephemeral, authoritarian and political speech.
Best regards,
Dr. Maria Leide Wan-Del-Rey de Oliveira
Rio de Janeiro, Brazil

Why Brazil is doing this?

Leprosy Mailing List – December 8th, 2011
Ref.:   Why Brazil is doing this?
K Cardoso Rodrigues, Governador Valadares, Brazil

Good afternoon Dr Noto,
I'd like to subscribe the Leprosy Mailing List.  I'm a family and community physician who works in leprosy in Brasil at municipality level, in Governador Valadares, an hyper-endemic city with 260,000 inhabitants and around 130 new leprosy cases per year (of those, 10% are children).

Thanks and congratulations about your recent message about why "Brazil" is doing this mistake of backing public politics in the "elimination paradigm".  Sure I'll spread it to health care workers and other interested people.

Katiuscia Cardoso Rodrigues
(33) 88470432

Why Brazil is doing this? – Leprosy in Colombia

Leprosy Mailing List – December 8th, 2011
Ref.:   Why Brazil is doing this? – Leprosy in Colombia
N. Cardona Castro, Sabaneta, Colombia

Dear Dr. Noto,
Thank you for your message “Why Brazil is doing this?” dated LML Dec. 4th, 2011. Your words about “elimination” of leprosy are remarkable important.
I would like to share some information about the leprosy situation in Colombia, a country with prevalence of leprosy less than 1/10,000 since 2000 year.  Colombia is still considered an endemic country where leprosy is not a public health problem because its prevalence, but there are about 200-400 new cases per year.  This means that the transmission continues, which has not been impacted by the multi-drug therapy (MDT) as expected.
Nevertheless, the reduction in prevalence is not a real reflection of the problem with respect to population distribution.  For instance, Colombia has some regions where the actual prevalence is 1 to 3/10,000 and other regions where prevalence is 0 to 0, 5/10,000.
When Colombia reached the prevalence of <1/10,000, the leprosy control programme suffered devastating consequences.  After reaching this figure health officials let down their guard and control programmes and control activities were under budget because "leprosy in Colombia is in the post-elimination phase."
I am MD and work in leprosy research, fact that is considering by my colleges as foolishness, because leprosy in Colombia does not exist, this is the interpretation of ELIMINATION, not only for general people, this is the interpretation for scientific and health authorities that have the responsibility to budget the public health policies.
Every week at least one patient with disability 2 or 3 is diagnosed as a NEW patient in Colombia.  The devastating consequences of “elimination” were not only for budget or leprosy control measures, these consequences affected the medicine school programmes, and leprosy is studied in Colombia as other mycobacterial diseases in a class that is forgot very easy for medical students.
I attach some epidemiological studies that we have performed to improve the early diagnosis in household contacts of leprosy patients, but where are the non-diagnosed patients and their household contacts?
What can we do Dr. Noto?
Nora Cardona Castro | MD MSc Investigadora Prof Asociada
Instituto Colombiano de Medicina Tropical - Universidad CES
Carrera 43A # 52 Sur 99  Sabaneta
Tel: (57) (4) 3053500 ext 2297 | Fax: (57) (4) 3014258
Leprosy in Colombia (PDF): Attachment 1 Attachment 2  Attachment 3

Commemoration of the Civil Servant Day in Brazil. FIOCRUZ initiative to honor its workers

Leprosy Mailing List – December 5th, 2011
Ref.:    Commemoration of the Civil Servant Day in Brazil. FIOCRUZ initiative to honor its workers.From: P A M Schreuder, Maastricht, The Netherlands

Maastricht, 30-10-2011
José Augusto da Costa Nery, MD, PhD - Professor of Dermatology, University Gama Filho, FIOCRUZ and Santa Casa, Rio de Janeiro
José Augusto was born and studied medicine in Belém, Pará, Brazil.  In 1982, he came to Rio de Janeiro to do a 2-years post-graduate course in dermatology.  He always was interested in the public health side of dermatology and became involved through Prof. Dr. Maria Leide W. de Oliveira in the Hanseníasis programme of Caxias, Rio de Janeiro.  When Dr. Maria Leide became National Hanseníasis Coordinator at the Ministry of Health of Brazil in 1986, she invited Prof. Dr. Euzenir Sarno to set up a Leprosy National Referral Centre at FIOCRUZ (Fundação Oswaldo Cruz, Rio de Janeiro, Brazil) and to start research in Hanseníasis.  José Augusto was then invited to help to re-start and give new life to the Hanseníasis Outpatient Department of FIOCRUZ.  He has many scientific publications to his name.
José Augusto is one of the few dermatologists interested in public health, and his two main areas of interest are Hanseníasis (FIOCRUZ and Santa Casa) and Sexual Transmitted Diseases (Santa Casa).  He must be one of the very few dermatologists who do not have a private practice.  He is Professor of Dermatology, University Gama Filho and supervises residents in dermatology and medical students at FIOCRUZ and Santa Casa.  He is a very dedicated Doctor to his patients and an excellent and compassionate teacher, and has a very gentle personality. 
With great respect we would like to praise this initiative of FIOCRUZ, an international well-known research Centre in many fields of medicine, to honor its workers.  We, readers of LML, we are very pleased to extend our congratulations to José Augusto.
Ben Naafs
Salvatore Noto
Pieter AM Schreuder

Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India

Leprosy Mailing List – December 5th, 2011

Ref.:   Maharogi Sewa Samiti (MSS), Leprosy Rehabilitation Foundation, India.
FromS. Amte, Warora, Maharashtra, India

Dear Dr. Noto,
Maharogi Sewa Samiti is a non-profit organisation in Maharashtra State of India.  MSS was founded by my grandfather, world renowned leprosy activist, humanitarian and peacemaker late ‘BABA AMTE, way back in 1949 for helping leprosy afflicted people to enhance their livelihood capabilities through self-discovery and empowering them to contribute back to the society.  My grandfather Baba was the only person to receive UN Human Rights Award for the cause of leprosy.  He has also received several prestigious honors, like The Damian Dutton Award, Ramon Magsaysay Award and the Templeton Prize.

MSS has a firm belief in giving a 'Chance' and not just charity to the socially outcasts who have lost sense of self-respect.  It gives them opportunities to self-discover the worth of their hidden ability and thus eliminate their dependence on others.

MSS has been a pioneer in medical treatment and rehabilitation of leprosy patients in India.  We are proud to inform you that in June 2011, our organization has crossed a mark of benefitting 2.3 million marginalized people like the leprosy afflicted, people with disabilities and tribal populace through our constructive programmes.

Due to the qualitative enhancement in the lives of leprosy afflicted people with disabilities, MSS has been increasingly getting recognized internationally as an apex referral centre for leprosy rehabilitation.  This is evident with the fact that MSS received over one new leprosy patient each day at Anandwan, the headquarters, from various parts of the country and sometimes, the world.

Anandwan is perhaps the only experiment in the country where leprosy patients help others help themselves.  Leprosy patients produce various goods worth Rs. 40 million every year through various productive activities.  With the help of our cured leprosy patients, MSS now arranges various medical and surgical camps which benefit over 60,000 poor people from surrounding poverty stricken areas every year.  Anandwan dairy project has been able to generate 700 litres of milk every day.  Because of the relentless efforts of our people afflicted by leprosy, is been looked at as one of the most promising social businesses in the district.  It is a matter of pride that the non-exploitative, non-bureaucratic management system of MSS is being studied by various apex educational institutes that include civil services, IIMs, IITs, social science institutes, environmental science and agricultural institutes from all over the world.

We would like to be a part of LML and receive information about more such organisations in the world and explore the possibility of constructive association.  We would also like to explore the possibility of partnering with ILEP for livelihood promotion programmes with leprosy patients.  We cordially invite you to visit ANANDWAN sometime, our “Paradise of, for & by the Underprivileged” to see our inmates celebrate the birth of new life with great enthusiasm.
With warm regards,

Dr. Sheetal Amte
Development Officer
Maharogi Sewa Samiti
Maharashtra, India

Why Brazil is doing this?

Leprosy Mailing List – December 4th, 2011
Ref.:   Why Brazil is doing this?
S. Noto, Genoa, Italy

Dear All,
In  1991 the World Health Assembly (WHA) approved the resolution “Elimination of leprosy as public health problem by the year 2000”.  Elimination was defined as a prevalence rate of less than one case per 10,000 population.   That was a sad experience of how Ministries of Health can be misled and, strategies without sound scientific basis can be approved.  
For years leprosy workers were asking how that happened?  In 2004 Dr Sansarricq, ex head of the leprosy division at WHO gave the explanation.  In his publication (Multidrug therapy against leprosy: development and implementation over the past 25 years / [editor]: H Sansarricq) he explained that the authors of the “elimination” strategy (no names are given) “felt” that the strategy had no scientific basis and instead of correcting it, they decided to bypass the requested procedures. 
Herewith are reported Sansarricq’ s words:  << “ … Noteworthy, too, is that the elimination initiative was recommended by the WHO Executive Board and the World Health Assembly without a WHO Expert Committee meeting, Study Group, or other preparatory step.  It may have been felt that a technical meeting was likely to express some reservations about the elimination concept …”> >
The major points of the “Elimination” resolution are wrong.  The Table 1. shows the components, namely: the goal, “elimination”; the indicator, “ register prevalence rate” and; the benchmark, “one in 10,000” and,  alternatives are suggested.
The word “elimination” is inappropriate.  It signifies elimination of the disease (i.e. the disappearance of that disease from a region).  Even when the so-called elimination goal is reached we are still left with enormous numbers of patients.  For example in countries like India and Brazil the numbers would still be about  120,000 and 20,000 cases per year respectively.  How such numbers of cases of a serious and complex disease like leprosy can be called “elimination”?
Prevalence in an area consists of the known prevalence, those patients on register, and the patients not yet diagnosed.  The real prevalence is often more than twice the known prevalence.  For the elimination strategy only the known prevalence, defined as the number of patients on multi-drug therapy treatment, was taken into account.  Apparently the patients not yet diagnosed and living in the community were not considered to take part in the transmission of the infection. 
There is a mathematic formula that correlates prevalence and incidence.  Prevalence is equal to incidence times duration of the disease.  If treatment shortens the duration of disease, the prevalence goes down but, this does not necessarily influences incidence and the persistence of the transmission in the community.  
The Figure 1. shows the global trend of the registered point prevalence (in red) and new case detection (in blue) of leprosy from 1985 to 2010.  The source of the data is the Weekly Epidemiologically Record (WER).  The red line is misleading.  In the studied period the duration of the treatment of leprosy has changed and consequently the prevalence too but, is the blue line that is nearer to core of the problem.
An indicator related to incidence, like new case detection is more appropriate to monitor the trend of leprosy and gives better information about the risk of contracting the infection in a given community.
The benchmark used, “one in 10,000 population” has no meaning.  The biology and the epidemiology of the disease have no relation with it.  The endemic foci of leprosy will continue to produce new cases above and below this benchmark.  Nobody knows who “invented” it.
Many colleagues have reported these and, other problems of the so called “elimination” strategy.  Dr Sansarricq from WHO has honestly explained what happened.  The new WHO strategies (2006-2010) have adopted the necessary changes.
Some days ago, on November 23rd, 2011 at the national congress of the Brazilian Society of Hansenology and regional congress of the International Leprosy Association, in Maceio’, Brazil, the Brazilian Ministry of Health announced, via video-message, that his country will adopt the so called “Elimination” strategy.  As discussed above such a policy would not have any scientific significance.
S. Noto