Leprosy Mailing List Blog: March 2009

Thursday, March 12, 2009

Hanoi Workshop and Guidelines for drug resistance surveillance

Leprosy Mailing List, March 10^th, 2009

Ref.: Hanoi Workshop and Guidelines for drug resistance surveillance

From: Pannikar V., New Delhi , India

Dear Dr Noto,

Please find attached the final report of the Hanoi Workshop and the Guidelines for drug resistance surveillance. (in PDF format)

May I request members of the discussion list (LML) for their support for sustaining the drug resistance surveillance for leprosy, in order to limit its development and transmission.

Regards,

V. Pannikar

Social stigma, poverty and complications of leprosy

Leprosy Mailing List, March 7^th, 2009

Ref.: Social stigma, poverty and complications of leprosy

From: Nwafor C., Enugu , Nigeria .

Dear Dr Noto,

I quite agree with Dr Barminus (LML February 28^th, 2009) on the issue of social stigma among people affected by leprosy. What worries me most is the fact that governments of resource poor countries were this stigma is a big challenge are not doing enough to reduce the stigma.

Government in my country Nigeria is yet to domestic the Convention on the Rights of People with Disabilities. Little efforts being made in areas of rehabilitation including social integration are spearheaded by organizations like the German Leprosy and Tuberculosis Relief Association (GRLA). For instance GLRA Nigeria has developed a three year strategic plan transiting from Socio-economic rehabilitation (SER) to Community-based rehabilitation (CBR). The idea is to involve communities and other stakeholders in efforts to reduce stigmatization of People with disabilities (PWD)s.

It is my candid opinion that Governments should through relevant Ministries take the issue of rehabilitation of PWDs seriously. Appropriate legislation should be put in place to ensure that PWDs are not stigmatized in workplaces, communities etc.

Also, community education should be intensified to raise awareness about leprosy so that patients seek care promptly in order to reduce development of leprosy reactions that ultimately lead to disabilities, discrimination and poverty.

Together we can do it. YES, WE CAN!

Dr Nwafor Charles C.

Medical Adviser.

GLRA Office,

35 Hillview Avenue Independence Layout,

Enugu

Nigeria

Praises and criticisms about the so called leprosy “elimination” policy

Leprosy Mailing List, March 7^th, 2009

Ref.: Praises and criticisms about the so called leprosy “elimination” policy

From: Bendick C., Phnom Penh , Cambodia

Dear Salvatore,

I am interested in the "elimination" because it is an important matter for a dermatologist working in the tropics to understand. Moreover, there seems to be a longstanding and ongoing debate on this topic. But I am neither a leprologist nor an epidemiologist, so certain aspects may have escaped my understanding.

Praise:

- The elimination campaign has contributed to keep the topic of "leprosy" alive and to launch information campaigns worldwide and particularly in affected countries.
- MDT coverage was increased.

- Detection of leprosy cases was increased.

- Number of patients with permanent disabilities was diminished (?).

- Leprosy related morbidity and mortality were markedly decreased.

Criticism:
- To define "elimination" as a prevalence of <1/10.000 is debatable.
- Elimination should have targeted incidence instead of prevalence.
- Despite elimination on a worldwide scale, ca. 5 million new leprosy cases are expected between 2000 and 2020.
- In 2020 there will be appr. 1 million patients with leprosy-related disabilities.
- Not enough work is done to stop transmission of M.leprae.
- Not enough efforts are undertaken to consider prophylactic therapy of subclinical cases.
- Not enough work is done on the question of non-human reservoirs of M.leprae.
- Achieved elimination gives us the false impression of leprosy not being a problem any more, thus funds may be cut, knowledge diminishes and disabled patients are marginalized.

-No young Doctors are interested in this field anymore.

Please correct me if I am wrong or if I have missed important points.

Thanks and best regards from Cambodia (where leprosy is “eliminated”)

Christoph

Dr. med. Christoph Bendick
University of Health Sciences
BP 1006
Phnom Penh
Cambodia
Tel. +855 12 914294
Fax: +855 23 430129

"Elimination" should be restricted to professional bodies and “Control” used for the general public

Leprosy Mailing List, March 7^th, 2009

Ref.: "Elimination" should be restricted to professional bodies and “Control” used for the general public

From: Palande D. D. , Kurichikuppam, Pondicherry , India

Dear Dr Noto,

I don't see any controversy, it is obvious that the term "elimination" should be restricted to professional bodies and the sensible easily understood term for the general public should be 'control' or something descriptive and precise.

Elizabeth Poorman has very rightly responded to the affected person's comments and I appreciate the same.

Best regards,

Dinkar D. Palande

Perhaps elimination is not the term to use with chronic illnesses

Leprosy Mailing List, March 5^th, 2009

Ref.: Perhaps elimination is not the term to use with chronic illnesses

From: Narasimha Rao P., Hyderabad , India

Dear Salvatore,

Ref: LML dated 4th March 2009 from: Both P., Apeldoorn , The Netherlands

I am not sure which comment, either of Vijayakumaran or Piet Both is unfriendly. The members need to understand every part of the world has their way of expressing their thoughts in writing, especially in a language such as English which is not their native tongue. The construction of sentences and phrases need not always be according to 'accepted customs' of elite/native English users.

This has to be kept in view, especially while reading a LML correspondence and labelling it unfriendly. The reply of Vijayakumaran stated his view and was directed, as I understand, towards all LML readers.

Dr. P. Narasimha Rao

Hyderabad

Perhaps elimination is not the term to use with chronic illnesses

Leprosy Mailing List, March 4^th, 2009

Ref.: Perhaps elimination is not the term to use with chronic illnesses

From: Both P., Apeldoorn, The Netherlands

Dear Salvatore,

I refer to Dr Vijayakumaran’s message (LML March 3rd, 2009). This is quite an unfriendly reply of a well respected Dr Vijayakumaran to a Medical student, Elisabeth Poorman, who (as I suppose) has made an effort to meet people in leprosy villages, there were they live, and who has tried to understand the issues in their lives. This is not just an emotional statement and I suppose Elisabeth has tried, in one way or another to listen to or together with them address real issues in the lives of those who live there.

Yours,

Piet Both

Perforation of hard palate

Leprosy Mailing List, March 3^rd, 2009

Ref.: Perforation of hard palate

From: Warren G., Sydney , Australia

Dear Salvatore,

Ref: perforation of hard palate. Yes, it happens. I saw quite a few in the 1960s and 70s. Usually before the patient come for any treatment. Yes, reconstructive surgery is difficult. But it is not necessary. It can hardly be called an emergency. Provide the patients with an artificial palate like used to provide dentures! The patient is much more comfortable and looses the nasal component of speech, and his drink no longer goes up his nose.

Sounds you simple, but it works!

Grace Warren

Perforation of the hard palate in leprosy

Leprosy Mailing List, March 2^nd, 2009

Ref.: Perforation of the hard palate in leprosy

From: Manimozhi N., Bangalore , India

Dear Dr Salvatore Noto,

Thanks to Dr A. G. Barminus, from Nigeria , for bringing out (LML Feb. 12^th, 2009) an interesting topic on “Perforation of the Palate”. In this regard I would like to share our experience we had encountered sent as an attachment – pdf format presented in brief with photographs.

These complications do occur though not very common. We did try all possibilities for reconstructive surgery but in vain due to various reasons, and meanwhile it was an emergency we had to handle with all possible means. I hope that the information given will be useful and we also look forward for suggestions regarding reconstructive surgery.

With best wishes and kindest regards

Thanking you

Sincerely

Dr N. Manimozhi

Medical Coordination

AIFO- India/BanglaDesh

Bangalore

India

Social stigma, poverty and complications of leprosy

Leprosy Mailing List, February 28^th, 2009

Ref.: Social stigma, poverty and complications of leprosy

From: Barminus A. G., Garkida, Adamawa State , Nigeria

Dear Sir,

As we all know, leprosy patients are highly stigmatised in our societies. No matter how highly placed you are the moment you are diagnosed with leprosy you automatically loss your social status in most parts of the world. This social stigma brings about low self esteem.

If you are a trader no one buys from you any more. Jobs are not available for you because you are known to have leprosy; indeed jobs are in fact lost in some circumstances. This often pushes people affected by leprosy to work hard in the field so as to eke a living for themselves and family. Stress sets in and, this may trigger reactional states. The man or woman is too busy to go to the hospital early. This leads to loss of sensation and because he is in the field he easily gets injured. Again he fails to go to the hospital early perhaps because he cannot afford transportation. The ulcer becomes complicated leading to mutilations which further worsen the stigma he already suffers from. And so the cycle continue. (enclosed word document with cycle)

As part of our duty we should strive at making patients have confidence in themselves, stress the need for early reporting when signs of reactions are noticed and the necessity of rest in their lives.

Yours sincerely,

Dr A. G. Barminus

State Dermatology Hospital

Garkida

P.O. Box 5478, Jimeta -Yola

Adamawa State

Nigeria

Leprosy “elimination”

Leprosy Mailing List, February 28^th, 2009

Ref.: Leprosy “elimination”

From: Bendick C., Phnom Penh , Cambodia

Dear Salvatore,

The "Elimination of Leprosy" is an endeavour which attracts a lot of praise (usually from public health staff and epidemiologists) and a lot of criticism (usually from leprologists and practitioners). I think, in general, I get the point what about the criticism is, nevertheless I would very grateful if a specialist could explain what exactly the focus of criticism is and by which criteria it is substantiated.

Thank you very much.

Dr. med. Christoph Bendick
University of Health Sciences
BP 1006
Phnom Penh
Cambodia
Tel. +855 12 914294
Fax: +855 23 430129

Training courses in Monitoring and Evaluation

Leprosy Mailing List, February 26^th, 2009

Ref.: Training courses in Monitoring and Evaluation

From: Ogbeiwi O., Wakefield , United Kingdom

Dear Dr. Noto,

The attached information (Word format) on our training courses in 2009 in Nigeria is for the attention of the LML subscribers, please. The application form will be sent to interested persons on request.

Thank you.

Dr. Osahon Ogbeiwi

Executive Consultant
Jeremie Programme Management Services (UK)
146 Bradford Road, East Ardsley
Wakefield WF3 2DJ
United Kingdom

For Proposal Writing, Operational Research, Strategic Planning, M&E Training, Progress Monitoring, Data Management or Independent Evaluation of your programme... Call now! +44 7999444545 (mobile), +44 1133074513 (home)

Hoarse voice and perforation of the palate in leprosy

Leprosy Mailing List, February 12^th, 2009

Ref.: Hoarse voice and perforation of the palate in leprosy

From: Barminus A. G., Garkida , Nigeria

Dear Dr Noto,

I present a case of a lepromatous leprosy patient with the complain of hoarse voice. I saw this patient during one of my visits to other hospitals. Examination revealed a perforated palate. The diagnosis of leprosy had been made many years earlier. The destruction started before he presented himself to the hospital.

How common is this type of destruction seen in patients? There is no reconstructive surgery available. Picture and some patient’s data are attached in a Power Point file.

Dr A G Barminus

Dr A. G. Barminus.

State Dermatology Hospital

Garkida

Nigeria

Request of photogrpahs of leprosy reactions

Leprosy Mailing List, February 9^th, 2009

Ref.: Request of photogrpahs of leprosy reactions

From: Cross H., Nepal

Dear Salvatore,

Colleagues and I are attempting to develop a standard protocol to test the ability of peripheral government health workers to diagnose and treat reactions and neuritis. I would be very grateful if any readers can assist us by contributing good quality photographs that show clear signs of type 1 and/or type 2 reaction. We will be particularly grateful for photographs of African people presenting with reaction.

Permission to publish the photographs will also be appreciated. I will be very grateful if photographs can be sent to hacross@pldtdsl.net

Regards,

Hugh Cross

American Leprosy Missions - Technical Consultant
The Leprosy Mission - Nepal Country Leader

Informal consultation on innovative approaches to further reduce leprosy burden in countries.WHO SEARO, New Delhi , India , 17-18 September 2008

Leprosy Mailing List, February 2^nd, 2009

Ref.: Informal consultation on innovative approaches to further reduce leprosy burden in countries.WHO SEARO, New Delhi , India , 17-18 September 2008

From: Pannikar V., New Delhi , India

Dear Dr Noto,

Please, find attached the printed version (in PDF) of the WHO-Doc for your perusal.

Regards,

V. Pannikar

Perhaps elimination is not the term to use with chronic illnesses

Leprosy Mailing List, March 3^rd, 2009

Ref.: Perhaps elimination is not the term to use with chronic illnesses

From: Vijayakumaran P., Chennai, India

Dear Dr Noto,

Greetings from Damien Foundation India Trust. I refer to Ms. Poorman’s message (LML March 3^rd, 2009).

The term leprosy control had been used for many decades. No one raised any objection. When there was a hope of achieving more than that new term was introduced. The term "elimination" was used for a purpose with a clear definition. Now since the purpose is achieved/reached the term is not valid anymore.

Commendable efforts of large committed work force from government and non-governmental agencies have brought about this change. The result is not virtual. Small pox was eradicated in 1979. I do see many persons with residual evidence of small pox. Does it mean that disease was not eradicated?

The needs of leprosy affected persons are different especially those living in leprosy colonies. One may look into finding means to address these issues rather than giving emotional statements.

With best wishes,

Dr.Vijayakumaran.P

Director (Programme)

Damien Foundation India Trust

Chennai , India

Leprosy Mailing List, March 3^rd, 2009

Ref.: Leprosy control (see attachments)

From: Richardus J. H., Rotterdam, The Netherlands

Dear Salvatore,

I refer to Dr Bendick’s message (LML Feb. 28^th, 2009). Could you please forward the attached articles in PDF format (Article 1 and Article 2) to Dr. Bendick, I think they may be useful for him.

With kind regards,

Jan Hendrik Richardus

J.H. Richardus MD, PhD
Associate Professor
Department of Public Health
Erasmus MC
University Medical Center Rotterdam
P.O. Box 2040
3000 CA Rotterdam
The Netherlands
tel. +31 (0)10 4638473
j.richardus at erasmusmc.nl

Perhaps elimination is not the term to use with chronic illnesses

Leprosy Mailing List, March 2^nd, 2009

Ref.: Perhaps elimination is not the term to use with chronic illnesses.

From: Poorman E., Atlanta , GA , USA

Dear Dr Noto,

I refer to Dr Bendick’s message (LML Feb. 28^th, 2009).

I cannot speak to a rigorous criticism of the terminology, but I can say that in my work in the remaining colonies of Brazil , the word "elimination" was particularly hurtful to the residents. Since they still suffer from the effects of leprosy, not to mention isolation, they do not consider themselves "cured," and "elimination" of leprosy to them can only happen when they die out. As a result, many residents expressed that they believed the government was waiting for them to die.

Perhaps elimination is not the term to use with chronic illnesses.

Elisabeth Poorman

Medical student, Emory University

Atlanta , GA , USA