Sunday, December 30, 2018

(LML) The Leprosy Mailing List

Leprosy Mailing List – December 30,  2018

Ref.:  (LML) The Leprosy Mailing List 

From:  Francesca Gajete, Manilla, the Phillppines


 

Dear Dr Pieter and The Editorial Board,

 

Seasons Greetings to All from the Philippines!

 

Indeed, the LML has been an effective tool for us who are still in public health sharing updates in for the leprosy control program.

 

We wish to thank Dr Pieter and the EB for our inclusion and for sharing on line discussions on issues that usually concern us but would not know WHO, WHERE AND HOW TO ASK.

 

We hope and pray LML will continue its advocacy. 

 

Best regards,

 

Dr Francesca C. Gajete,MHA,FPLS

Former National Leprosy Control Program Manager(Ret)

Vice President for ASIA,Philippines 

Chair,20th International Leprosy Conference September 2019


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


(LML) Why M.leprae defeates us


Leprosy Mailing List – December 30,  2018

Ref.:   (LML) Why M.leprae defeates us

From:  Joel Almeida, Mumbai and London


 

Dear Pieter,

 

We don't know everything about M. leprae and its interaction with us. However, we probably know enough to protect people much more reliably than at present.

 

1. We need to identify people with anergy, polar LL patients, so that we can keep protecting them against M. leprae.

 

M. leprae currently spreads, in important part, because we withdraw anti-microbial treatment prematurely from such patients with anergy. M. leprae that pass from one person with anergy, to another with anergy, are sufficient to defeat our leprosy control efforts. No amount of early detection and treatment of non-infectious patients can compensate for that error among polar LL patients.

 

Unfortunately, we discouraged skin smear services, and they are now in need of rebuilding. That makes it difficult for us to recognise patients with anergy. As a result, we continue to withdraw anti-microbial treatment prematurely from such patients. This means that M. leprae continue to spread, while continuing to damage these patients. This mistake can be corrected.

 

We need to rebuild skin smear services, urgently, and to provide prolonged anti-microbial protection to patients with polar LL leprosy. It is probably the lowest-hanging fruit in leprosy treatment and control, with one of the biggest payoffs.

 

 

2. We need to monitor nerve function regularly and competently, because most nerve damage in south Asia occurs without signs or symptoms of reaction (1). Then we can intervene with anti-inflammatory treatment promptly enough to prevent and reverse nerve damage.

 

A randomized controlled trial (2) compared corticosteroids - prednisolone - given for 4 months, with placebo. During these 4 months, the placebo group had a 158% higher risk of deterioration in sensory scores between the start and end of treatment (confidence interval 19% to 460%). We need to keep reminding ourselves of this randomised controlled trial. And we need to act on this RCT so that we protect the limbs, eyes and lives of the vulnerable people who trust us.

 

This, too, requires the rebuilding of formerly available services. This time, for nerve function testing.

 

Otherwise, as a recently reported RCT in Brazil showed (3), about 30% of patients will suffer worsening of disability despite MDT. That equates to over 400,000 people in India newly suffering worsening of disability over the coming decade. We can do better than that. However, it does require us to rebuild the mobile nerve monitoring services that formerly visited patients near their homes at regular intervals.

 

 

3. We need to do sample surveys every few years, perhaps every 5 years, relying on highly skilled personnel. Otherwise we are reduced to guesswork about the endemic.

 

The national sample survey in India, using reliable personnel and methods, demonstrated that for every 4 recognised patients there were about 6 unrecognised patients (4). The Supreme Court of India was sensible in ordering that such sample surveys be repeated regularly. 

 

Persons affected by leprosy had approached parliamentarians in India's upper house, expressing doubts about the claimed decline of leprosy. That's how the sample survey came to be done.

 

People whose eyes or limbs were damaged by leprosy obviously remained clear-sighted when it came to the magnitude of leprosy. Such persons have an important role to play in defeating M. leprae because they don't underestimate the problem. A coalition between them and reliable experts is likely to yield good outcomes.

 

 

4. We need accurately to depict the weight of disability that is experienced by people affected by leprosy. That is the real burden of leprosy. Closing our eyes to their situation does not help them. Nor do subjective descriptions of the magnitude of leprosy.

 

Experts in every disease, except leprosy, do this correctly. It is a simple formula, used by the Institute for Health Metrics and Evaluation in describing the burden of morbidity from a disease:

 

Prevalence of disability x weight of disability

 

It is used for other diseases and their sequelae. We need to start using it for leprosy too. People affected by leprosy have enough disadvantages without us experts misrepresenting and underestimating the magnitude of the disease relative to other diseases. 

 

Otherwise, leprosy will continue to be neglected because of our failure to observe established practices that are used in every other disease.

 

 

Conclusions

 

We experts have sometimes been inexpert. Worse, our inexpertise and propensity to imagine victories has led us to destroy competent leprosy services. The sooner we recognise this, the more quickly we can transform the situation.

 

The good news is that we can now correct our mistakes. We owe this to the vulnerable people who trust us. We can become builders of competent services once again. 

 

We have no shortage of compassionate people with strong scientific skills and front-line implementation experience. Let's join together, invite a new generation to join us, and do it. 

 

Let's make 2019 much worse for M. leprae, and much better for human beings at risk of leprosy and its consequences.


 

Joel Almeida

 

 

References

 

(1) Srinivasan H, Gupte MD. Experiences from Studies on Quiet Nerve Paralysis in Leprosy Patients. Indian J Lepr 2017, 89 : 203-215.

 

(2) van Brakel WH, Anderson AM, Withington SG, Croft RP, Nicholls PG, Richardus JH, et al. The prognostic importance of detecting mild sensory impairment in leprosy: a randomized controlled trial (TRIPOD 2). Leprosy Review 2003;74(4):30010.

 

(2) Penna GO, Bu¨hrer-Se´kula S, Kerr LRS,

Stefani MMdA, Rodrigues LC, de Arau´jo MG, et al.

Uniform multidrug therapy for leprosy

patients in Brazil (U-MDT/CT-BR): Results of an

open label, randomized and controlled clinical trial,

among multibacillary patients. PLoS Negl Trop Dis

2017; 11(7): e0005725. https://doi.org/10.1371/journal.

pntd.0005725 

 

(3) Kiran Katoch, Abha Aggarwal, Virendra Singh Yadav, Arvind Pandey. National sample survey to assess the new case disease burden of leprosy in India. Indian Journal of Medical Research, 2017; 146(5): 585-605.

 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 


Wednesday, December 26, 2018

(LML) The Leprosy Mailing List

Leprosy Mailing List – December 26,  2018

Ref.:   (LML) The Leprosy Mailing List

From:  Marcos Virmond, Bauru, São Paolo, Brazil


Dear Pieter,


I would like to add some comments to your note on the 2012 LR editorial (LML, December 23, 2018).


At this point in history, it is time to recognize and congratulate S Deepak, B Naafs, S Noto and P Schreuder, thus the Editorial Board, for the crucial role LML has played in these past years as an open, neutral, swift, democratic, ample in scope and accessible forum to gather scientists, researchers, persons affected, health personal and all persons involved in the fight against leprosy in a worldwide basis.


Linking persons, ideas and places, I believe that LML, in its kind, is so far the most successful communication initiative in the field of leprosy.


I wish all the best to LML in 2019 and beyond.


Marcos Virmond


ILSL-Bauru

Former ILA President

Former SBH President


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


Tuesday, December 25, 2018

(LML) New WHO guidelines on chemotherapy for PB leprosy

Leprosy Mailing List – December 25,  2018

Ref.:   (LML)  New WHO guidelines on chemotherapy for PB leprosy

From:  Jaison Barreto,  Bauru, São Paolo, Brazil


Dear Pieter, 

I have worked in the most endemic leprosy state in the last 3 years. We decentralize the attention to the leprosy patients in the municipality of Palmas. As many as 80% of the children have been diagnosed with borderline leprosy. Also, 20% of the relapsed cases were indeed borderline patients treated previously as having "PB leprosy".


In Brazil, as many as 27% of patients with less than six lesions should be treated as MB leprosy according to the bacilloscopy of the biopsy. This occurs because 85% of the slides from smears or biopsies in Brazil are not correctly stained or they have errors (collection, dyes, destaining, dewaxing procedures). Most histopathologists does not know Faraco Fite staining.


Our Ministry of Health is trying to recover the knowledge about laboratory technics lost since 1997. Today, in the world, a patient having diffuse leprosy or an initial borderline leprosy (80% of the cases of patients with leprosy in adults, according to Ridley) are being treated with PB scheme. They are called "PB with reaction". They are treated for only 6 months, and suffer from neuritis for at least 6 years, having corticosteroid disfiguring, until the "relapse" is finally assumed. This is a crime, in my opinion.


Is it rational to undertreat 40% of leprosy patients? Also, according to Chaterjee, lepromin highly positive Indeterminate or true tuberculoid (TT) leprosy are rare, i.e., with good prognosis, self limited. I have found less that 10 cases in my 20 years of experience in the national reference centre or in the field. Most I or TT cases were found in young children, and during active surveys.


The side effects of clofazimine occurs more commonly in patients taking for more than 1 year. This is the reason I fully agree with the new recommendation of WHO.


Regards,


Jaison


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


Sunday, December 23, 2018

Re: (LML) Lack of evidence to support WHO guidelines

Leprosy Mailing List – December 23,  2018

Ref.:  (LML)  Lack of evidence to support WHO guidelines

From:  Diana Lockwood, London, UK


Dear Pieter

 We would like to add to the concerns raised by Ruth Butlin about the evidence underpinning the latest WHO recommendations.

A group of leprosy academics have written to WHO with the following concerns (see annex).  I would be grateful if you could post these on the LML.

Best wishes,

Diana Lockwood


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com



From: Pieter AM Schreuder <impieter@hotmail.com>
Sent: 24 December 2018 03:15
To: jeanwatson27@hotmail.com; aifo.bologna.lmlblog@blogger.com
Subject: (LML) Lack of evidence to support WHO guidelines
 

Leprosy Mailing List – December 23,  2018

Ref.:  (LML)   Lack of evidence to support WHO guidelines

From:  Diana Lockwood, London, UK


Dear Pieter

 We would like to add to the concerns raised by Ruth Butlin about the evidence underpinning the latest WHO recommendations.

A group of leprosy academics have written to WHO with the following concerns (see annex).  I would be grateful if you could post these on the LML.

Best wishes,

Diana Lockwood


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


(LML) Lack of evidence to support WHO guidelines

Leprosy Mailing List – December 23,  2018

Ref.:  (LML)   Lack of evidence to support WHO guidelines

From:  Diana Lockwood, London, UK


Dear Pieter

 We would like to add to the concerns raised by Ruth Butlin about the evidence underpinning the latest WHO recommendations.

A group of leprosy academics have written to WHO with the following concerns (see annex).  I would be grateful if you could post these on the LML.

Best wishes,

Diana Lockwood


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com


(LML) The Leprosy Mailing List

Leprosy Mailing List – December 23,  2018

Ref.:  (LML) The Leprosy Mailing List 

From:  Pieter AM Schreuder, Maastricht, the Netherlands


Dear colleagues,

The past year we have seen quite a lot of new subscriptions, bringing the total well over 500. Not everyone is acquainted with the objectives and functioning of LML. Basically, it is an e-mail based (open) forum for exchange of information, mutual support, training and discussions on leprosy among persons based in different countries and continents. It was started in February 2001 by Salvatore Noto at the Centre for Training and Research in Public Health (Cefpas) in Caltanissetta, Italy, and up till now supported by AIFO by hosting our blog (LML blog link: http://leprosymailinglist.blogspot.it/).

LML is independent and has no financial ties to any governmental or non-governmental organization or the World Health Organization (WHO). All information passes its editorial board (S Deepak, B Naafs, S Noto and P Schreuder) before being distributed. However, opinions expressed are those of the contributors and not necessarily shared by the editorial board. LML contributions are not considered publications as a publication in a recognised scientific journal. They can (and are) however be cited because they represent professional opinions.

In an editorial of the Leprosy Review of 2012 (The leprosy mailing list. EDITORIAL. Lepr Rev (2012) 83, 331–334) the history, objectives and functioning of the LML are presented.

"The specific objectives of the LML are:

- 1) divulge information about leprosy, its causes, prevention and treatment;

- 2) share information about management of leprosy control activities and programmes;

- 3) share information about socio-cultural aspects of leprosy and

      rehabilitation of patients with disabilities;

-4) offer a distance learning tool in leprosy for health professionals; and

- 5) create a forum to discuss the main issues on leprosy and its control activities and programmes.

Contributions like papers, clinical cases, letters, comments, reports etc. are sent to the moderator (presently Dr. Pieter Schreuder) via e-mail, who edits them in a common format and are then circulated among the members. Often prior to circulation of the documents, there is an exchange of mails between the moderator and the contributor, to clarify or modify points that are not clear.

LML is not only a forum for those still active in the field of leprosy, but it also offers the opportunity to those not active in the field of leprosy anymore, but who have a wide and valuable experience to share, to continue to contribute to the education of new comers in this field."

To summarize, LML is an open forum to which all those interested in leprosy are welcome to contribute. All opinions are respected, but have to be well argued (preferably backed up by literature references) and relevant to the topic in discussion.

LML wants to pass our Season's Greetings. Do not hesitate, any contribution, may it be a problem you encountered in your field, or information you want to share, is welcome.

Best wishes for 2019,

S.Deepak

Salvatore Noto

Ben Naafs

Pieter Schreuder


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com