(LML) Sherlock Holmes Sunday read

Leprosy Mailing List – July 28,  2018

Ref.:  (LML) Sherlock Holmes Sunday read 

From:  Ajit P, Mumbai, India

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Editor: Some claimed that they did not receive the attached file. We will try again.

 

 

 

Respected sir,

 

I have just sent you an email with a PDF attachment of a Sherlock Holmes classic titled "The adventure of the blanched soldier". It elegantly describes stigma in leprosy. The story is also discussed in articles in The Journal of American Academy of Dermatology.

 

I downloaded it from Google scholar and was a free download or was open access. I accessed from India. If you feel it is appropriate to share it on the LML group, please do share.

 

Regards,

 

 

Ajit P

 

 

Note editor:

Indeed, a fine Sherlock Homes story. I would advise to print it out (only 12 pages) and enjoy reading it in a comfortable chair.

 

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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) Sherlock Holmes Sunday read

Leprosy Mailing List – July 28,  2018

Ref.:  (LML) Sherlock Holmes Sunday read 

From:  Ajit P, Mumbai, India

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Respected sir,

 

I have just sent you an email with a PDF attachment of a Sherlock Holmes classic titled "The adventure of the blanched soldier". It elegantly describes stigma in leprosy. The story is also discussed in articles in The Journal of American Academy of Dermatology.

 

I downloaded it from Google scholar and was a free download or was open access. I accessed from India. If you feel it is appropriate to share it on the LML group, please do share.

 

Regards,

 

 

Ajit P

 

 

Note editor:

Indeed, a fine Sherlock Homes story. I would advise to print it out (only 12 pages) and enjoy reading it in a comfortable chair.

 

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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) Improving the quality of leprosy treatment

Leprosy Mailing List – July 28,  2018

Ref.:    (LML) Improving the quality of leprosy treatment

From:  Francesca Gajete, Manilla, the Philippines

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Dear Dr Pieter,

 

We agree with Dr Joel Almeida (LML, July 13, 2018). Slit skin smear (SSS) should be part and parcel in the Treatment Plan of Leprosy Patients, New and Suspect cases. This practice contributed to the elimination of leprosy as a public health problem in the Philippines when Nursing Attendants underwent a month long training on SSS in the '80's and were sent to GIDA and far-flung areas.

 

There is a need to retrain our frontline workers on Slit Skin Smear (SSS), particularly out Local Government Unit Staff( Physicians, Nurses and Medical Technologists/Technicians) to sustain the successes we have achieved towards zero transmission.

 

Respectfully,

 

Dr Francesca Cando Gajete,MHA,FPLS

VP ILA,Philippines

Former NLCP Manager,Department of Health,Philippines 

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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) Manifest against the implementation of U-MDT

 

Leprosy Mailing List – July 27,  2018

Ref.:    (LML) Manifest against the implementation of U-MDT

From:  Joydeepa Darlong and SR. Narahari, India

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Dear Pieter,

 

Clofazemine is not acceptable in children. We force it on MB children and they take it with a great deal of unhappiness. Off record, most mothers confess that their children do not swallow clofazemine. Among those that do discoloration leads to maximum school dropouts and defaults. And we all now that maximum children are PB cases. Its unfair to thrust clofazemine on them.

 

Regards,

 

Joydeepa Darlong

Head Knowledge management

The leprosy Mission Trust India

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Dear Dr Schreuder,

 

Dermatologist Ajit (LML, July 26, 2018) has raised very relevant questions faced in daily practice in India. All of us running small clinics employing a few people who manage a portion of disease burden in the country.

 

Without publications I wish to say presentation has changed and dapsone side effects are increasing. I am seeing a patient presenting with haematuria for two weeks before skin rash. Later high neutrophils persist for a few weeks. Leprosy is not that common in Kerala but yes, it is coming back with more complex presentations and is beginning to challenge the present treatment regimens! 

 

SR Narahari

 

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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) Manifest against the implementation of U-MDT

Leprosy Mailing List – July 26,  2018

Ref.:    (LML) Manifest against the implementation of U-MDT

From:  Ajit P, Mumbai, India

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Dear Pieter,

 

I, as a dermatologist just want all members to ask themselves few of these questions!!!

Heavens forbid, but if you or your child or parent or partner or sibling gets leprosy, then???

I would request members to ask themselves these few hypothetical questions, regarding leprosy, considering the affected patient is you yourself or your child or parent, partner or sibling???

 

Would you get a slit skin smear and repeat it every year?

Would you get a skin biopsy?

Hematoxylin eosin only or also fite faraco stain method?

Would get a g6pd prior to therapy?

And would that g6pd be qualitative or quantitative?

What kind of regimen would you prefer?

WHO MDT for one year or two years or up to smear negativity or life long?

Daily rifampicin or monthly rifampicin?

Would you give newer regimens with multiple bactericidal agents like monthly moxifloxacin minocycline rifampicin?

If yes, for how long??? Six, twelve, twenty-four months, till smear negativity or life long?

Would you use U-MDT?

How often would you monitor while on therapy (Routine blood tests)?

How would you treat ENL? Thalidomide or steroids?

(Note- Sometimes ENL are accompanied by neuritis ....in this case steroids are also a must even if one is using thalidomide)

Considering the patient is a diabetic hypertensive male, what would be the drug of choice for ENL? Thalidomide or steroids?

How would you classify for treatment purposes?

Lesion counting alone (note: all erudite members must be definitely aware that there are not so small number of cases where number of lessons is less than five, but they are smear positive)

Lesion counting, and smears?

Lesion counting, smears, clinical assessment and histology (including file faraco) ?

Would you simply give U-MDT U and not bother to classify at all?

If the diagnosis is histoid leprosy or lepromatous leprosy, would give 

U-MDT U?

What would be your criteria before giving PB MDT??

 

 

What if you had financial constraints?

Would you use what you knew to be an inferior but CHEAP regimen? Or beg borrow steal, but give the best treatment?

What would be your philosophy for goals of treatment?

(Would you be very concerned about the reports of adverse effects? Or would you say "Damn the torpedoes! Full speed ahead!")?

Would you have Zero tolerance for relapse? Or relapse can be ok??

Would you have a philosophy of absolute cure, nothing but a cure and only a cure?

And finally, considering you are a dermatologist with a good experience and expertise in leprosy, on what would the above decisions be primarily based on?

Only guidelines?

Only published data??

Published data plus your own expertise and experience?

If there is contradiction in the published studies and your experience (that is that despite loads of evidence, your vast experience says something else?). Then would you go by guidelines or published data or give precedence to your genuine expertise……

 

Thanx

Dr Ajit

Dermatologist

Bandra Mumbai India

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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) Manifest Against the Implementation of U-MDT

Leprosy Mailing List – July 26,  2018

Ref.:    (LML) Manifest Against the Implementation of U-MDT

From:  Robert Gelber, San Francisco, USA

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Dear Pieter,

 

In Cebu (1,2) I participated in the most thorough and well-documented evaluation of MB relapse following 2 year MDT.   Because the results are most pertinent to the current discussion I wish to review some of these and their implications with your readers.   

 

All patients (500) had skin lesions of leprosy, a BI at 1 or more skin sites of 2 plus or greater, and had a skin biopsy for histopathology performed by a pathologist experienced with the method of Ridley and Jopling.    After the completion of therapy annual clinical  follow-up and skin smears were conducted for up to 16 years.   The majority of patients (316) were followed up by experienced leprologists, while the minority (184) by the general health services.   Relapse (23 patients) was confirmed by both new skin lesions consistent with leprosy and an increase of BI of 2 or more at any single slit/skin site.  Additionally upon relapse, skin biopsy for histopathology and in the mouse footpad M leprae viability and drug sensitivity to dapsone, clofazimine and rifampin was conducted.   

 

Some important relevant findings of this study:  

1.  Most relapses occurred very late, more than 10 years after the completion of therapy, and long after the 5 to 7 years follow-up advocated by the WHO and the duration of almost all published relapse experience.   In Cebu no relapses were detected in less than 5 years after the end of treatment; 8 relapsed patients were recognized 6 to 9 years thereafter, while importantly 15 patients who relapsed were only identified 10 years or more after MDT treatment had concluded.   There has been precedence for vary late relapse in MB patients when as in the Cebu study rifampin is part of the regimen.   Grosset (3) found in MB patients receiving a variety of rifampin containing regimens 39 relapses, all first observed a minimum 6 years after completion of therapy, on an average of 8 years and as long as 12 years after therapy had been discontinued.   Pattyn (4) reported in MB patients after completing an intensive 6 week regimen of daily rifampin, dapsone, minocycline and ofloxacin that relapses began to appear 6 years after treatment and most at the completion of followup at 8-9 years.  From the Cebu and these experiences, although operationally difficult, we recommend, if most relapses are to be recognized and the true incidence of relapse obtained, that follow-up for MB relapse be conducted for fully 15 years after MDT.

                      

2.   All but one of the 23 patients that relapsed had an average initial BI (6 sites) of 2.7 or more.   All relapse patients prior to MDT were classified histologically to be BL or LL and at relapse BL or LL.   Importantly no relapse was detected in patients with an initial biopsy of TT, BT and  BB, nor in any but the one relapse with an initial average BI of 2.7 or less.   Therefore, in Cebu not only do skin smears and biopsies identify those MB patients who are at risk for relapse, but, also, those who would be most unlikely to relapse.   We agree then, like several others who participated in this current dialogue, that  particularly skin smears but, also, skin biopsies be evaluated prior to leprosy chemotherapy.   Such information is invaluable to direct reliable chemotherapy and predict the risk of relapse.

 

3.   In Cebu relapse was found significantly higher when performed by experienced leprologists (16%) then the general health services (3%).   In those with the initial BI of 2.7 or greater followed-up by experienced leprologists relapse was detected at a rate of 21%, while those by the general health services it was but 3%.   These findings of a significant and profound difference in identifying relapses by well trained leprologists and the general health services demonstrate that the knowledge base,, experience and possibly procedures employed in follow-up evaluation are quite important if relapses are to be identified.   In the current climate where access to trained leprosy workers has largely disappeared, training in leprosy of all physicians and health workers charged with identifying MB relapse deserves the utmost attention.

 

4.   Skin biopsy from all 23 relapse patients grew M leprae in mice, confirming that viable bacilli were present at the time of relapse.   M leprae from all 23 relapse patients were found sensitive to rifampin and clofazimine and but one dapsone resistant, demonstrating in Cebu that relapse is not associated with a significant problem of drug resistance.   

 

There are several reports that MB relapse is both rare and common, the latter often associated with a high BI.   That discrepancy may, at least in part, be a function of the frequency of the varying faces of leprosy disease and relapse presentation in disparate locales and of the different forms of the disease encountered from place to place.   There are reasons why MB relapse may be missed and in studies underestimated.   Some of these we touched on earlier: not a sufficiently large MB proportion who are BL/LL and with a high BI, follow-up not of sufficient duration to capture the majority of relapses and the absence of knowledgeable, thorough and sequential evaluation for relapse.   On the other hand,   it is hard to dismiss a relapse diagnosis when confirmed, especially with a rising BI.   Though this current dialogue evolved from plans to reduce the recommendation of MB therapy from 1 year to 6 months, in Cebu and a number of other sites even 2 years MDT resulted in unacceptably high rates of relapse.   MB relapse is not merely an epidemiological observation that requires further therapy, but the cause of potential pain and suffering associated with the very relapse diagnosis itself, its morbidity and the potential for side effects and toxicities of further treatment.

 

Now that leprosy elimination by MDT has been reliably disproved, I am sure it is sad to hear that reliable cure of MB patients is, also, in doubt.   Surely then improved regimens should be developed with great urgency and  implemented.   Superior bactericidal activity in mice and clinical trial in leprosy to the components I most favor to marry with rifampin, moxifloxicin and minocyline, have been well-documented.

 

References

1. Cellona RV, Balagon MF, dela Cruz EC, Gelber RH et al. Long term efficacy of 2 year WHO multiple drug therapy (MDT) in multibacillary (MB) leprosy patients. Int J Lepr Other Mycobact Dis,  2003; 71: 308-319.
2. Gelber RH, Balagon MF, Cellona RV. The relapse rate in MB leprosy patients treated with 2 - years of WHO-MDT is not low. Int J Lepr Other Mycobact Dis, 2004; 2004; 72: 493-500.
3. Grosset JH, Guelpa-Lauras CC, Bobin P. Study of 39 documented relapses of multibacillary leprosy after treatment with rifampin.  Int J Lepr Other Mycobact Dis, 1989; 57: 607-614
4. Pattyn S, Grillone S. Relapse rates and a 10 year follow-up of a 6 week quadruple drug regimen for multibacillary leprosy, Lepr Rev, 2002; 73: 245-247

Robert Gelber

 

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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) ENL Severity Scale

 

Leprosy Mailing List – July 25,  2018

Ref.:    (LML) ENL Severity Scale

From:  Diana Lockwood, London, UK

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Dear Pieter, 

We are now using an ENL severity score that we have developed and validated as part of the ENLIST trial.

I have been using it here in London and finding it v useful. One can monitor ENL severity and response to treatment.

I would encourage other people to use this tool. We would appreciate as many people as possible using this in their clinics.

We developed the scale in earlier work and have validated it in the Plos NTD paper of 2017.

By attached file the form and users guide which comes on behalf of the ENLIST group.

Good Luck,

 

Diana NJ Lockwood

Barbara De Barros

Steve Walker 

Department of Clinical Research

London School of Hygiene & Tropical Medicine

London WC1E 7HT

 

Walker, S.L. ; Sales, A.M. ; Butlin, C.R. ; Shah, M. ; Maghanoy, A. ; Lambert, S.M. ; Darlong, J. ; Rozario, B.J. ; Pai, V.V. ; Balagon, M. ; Doni, S.N. ; Hagge, D.A. ; Nery, J.A.C. ; Neupane, K.D. ; Baral, S. ; Sangma, B.A. ; Alembo, D.T. ; Yetaye, A.M. ; Hassan, B.A. ; Shelemo, M.B. ; Nicholls, P.G. ; Lockwood, D.N.J. ; Erythema Nodosum Leprosum International STudy Group, . ; A leprosy clinical severity scale for erythema nodosum leprosum: An international, multicentre validation study of the ENLIST ENL Severity Scale. PLoS Negl Trop Dis (2017) 11(7):e0005716; DOI: 10.1371/journal.pntd.0005716; PMID: 28671966

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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) Manifest against the implementation of U-MDT

Leprosy Mailing List – July 24,  2018

Ref.:    (LML) Manifest against the implementation of U-MDT

From:  Arry Pongtiku, Papua, Indonesia

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Dear Pieter,

 

 

I would like to join in LML discussion about Manifestation against the implementation of U-MD. I would like to refer to the letter from  P Narasimha Rao, LML on 13 July 2018; Diana Lockwood and Steve Walker LML on July 6,2018, as well as Jaison Barreto on 7 July 2018.

 

The letter from Narasimha Rao, about new guideline MDT, 3 drugs for 6 months PB with 6 months duration, I would like to say for practical reasons and limited availability of PB drugs, we have already practiced three drugs (MB blister) for PB patients for 6 months for many years in Papua and West Papua Indonesia. It works OK. The reasons: it is sometimes difficult to take clofazimine out from MB blister to give to those PB patients where we have low level health workers. We have very many remote areas. Also it does not look very professional to give the partly damaged blister to PB patients. Clofazimine itself is liquid with soft capsule and is easily broken.

 

How can we achieve leprosy elimination in provinces and districts in Indonesia? It may take a long time. Many times we faced none availability or insufficient supply of MDT. Few times we wanted to buy MDT with our budget, but it is not available in the market. The world must ensure MDT coverage.

 

I agree with point 9 from Diana Lockwood and Steve Walker about MDT toxicity.  With high of incidence of DDS allergy in Papua, we always dream to have different and  safe drugs for leprosy. Field workers in Papua and West Papua have many experiences and successes in treating DDS allergy, however some patients died. We also consider anaemia because of DDS (haemolytic anaemia in some patients). Leprosy as a chronic disease and malaria are commonly coincidence to make it worse for anaemia. We also want to hear about alternative treatment. ROM (Rifampicin, Ofloxacin, Minocycline), is mentioned as alternative. However,  O and M are  hardly to be found in Indonesia.

 

The letter from Jaison Barreto on 7 July 2018 mentioned cohort study in state of Mato Grosso from 1800 patients relapses clinically and histo-pathologically confirmed. Average time of relapses were 5.9 years for PB and 7.25 years for MB patients. There was mentioned Rifampicin regiment kill almost all alive M.leprae and the phenomenon of lag phase (dormant) for long time. We saw recently patients in Papua with relapse after 3-5 years and  after 10 years. I consider it to be reinfection rather than dormant, but is this true?

 

Therefore, in practice we have to exam all people at home and neighbours to make sure there will be no more source of infection? I agree to expand chemoprophylaxis to make sure there will be no more sources of infection. From our experience in making a blanked chemoprophylaxis for the tribal Mumugu ,isolated area, in Asmat Papua (350 population,  half of the population with leprosy). We treated them with MDT for those who have clinical leprosy and single chemoprophylaxis with Rifampicin for those without symptoms. May be next year (after 4 years) will be followed up by National Biomedic Research  in Papua.

 

I also learned from the field, some leprosy patients with schizophrenia on the street, we treated them with head of MB blister (Double Rifampicin, DDS, lamprene), due to his/her disease, we could not expect them to finish all treatment and we just continued the rest of blister as possible, the results were good. We hope 3 drugs could be as treatment and as chemoprophylaxis to cut transmission.   

 

Leprosy trend remains stable in Indonesia and especially in my place Papua. Again, MDT coverage, chemoprophylaxis, BCG, door to door, leprosy in curriculum, health awareness, economic improvement all combined go to create the world free of leprosy as is our dream.

 

Thank you,

 

salam,

 

Arry Pongtiku

Former National Leprosy Advisor in Papua and Papua Barat, Indonesia.

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

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

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