Thursday, June 20, 2019

(LML) Has the gecko myth been debunked?

Leprosy Mailing List – June 20,  2019

Ref.:    (LML) Has the gecko myth been debunked?

From:  Ajit P, Maharashtra, India


Respected Sir,


Recently while browsing the internet, I came across information that there is (was?) a myth in Punjab, India and other places elsewhere like Egypt that house gecko or lizard or it's urine caused leprosy. I searched internet and pubmed for the same.


Have there been studies using current techniques like PCR to debunk this myth, proving that Mycobacterium Leprae or Lepromatis is not found in the gecko or it's scales or secretions or adhesive like secretions from it's pads?


Dr  Ajit P


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, June 19, 2019

(LML) Type 1 reaction: downgrading versus reversal reactions

Leprosy Mailing List – June 19,  2019

Ref.:   (LML) Type 1 reaction: downgrading versus reversal reactions

From:  Kabir Sardana, Delhi, India


Dear Pieter,


It is unfortunate to see that type 1 reaction has been labelled as reversal reaction even though we have seen many cases of Type 1 downgrading reaction where patients present with a reaction localised to the skin with little neuritis and with lesions of the lower spectrum in conjunction with the reaction.


These patients present with reaction, and are not on treatment that makes upgrading unlikely. Also, this reaction is mentioned in all the major textbooks (Hastings, Jopling Handbook of leprosy, Dharmendra Leprosy, Leprosy by Khanolkar and numerous published articles).


While the reason for downgrading is not clear, which is the case for most reactions, that is no reason for this to be ignored. The reasons are that while we see these cases (1/week) removing this from the lexicon of Type 1 reaction makes this difficult to stratify for clinicians - as where would you place a patient with erythema, oedema of lesions suggestive of a lower pole with no neuritis?


Most importantly I have found them much easier to treat than upgrading - probably because suppressing a heightened CMI (upgrading reaction) is much more difficult!  Of course, a cytokine analysis would be ideal (which we are doing) but the biopsy is also useful for diagnosing them and has been shown by many studies in the past. The so-called rising BI is not always possible to confirm as patients tend to present with reactions and the preceding primary lesion is difficult to discern.


Thus, possibly if Type 1 downgrading is added this can help to decide the type 1 reaction that easier to treat.


Dr. Kabir Sardana

Prof. Of Dermatology

Dr RML Hospital 7 PGTMER

Delhi – 110001


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) Ms. Alice Cruz and Human Rights Council on 24 June 2019

Leprosy Mailing List – June 19,  2019

Ref.:   (LML) Ms. Alice Cruz and Human Rights Council on 24 June 2019

From:  Secretariat OHCHR, Geneva


Dear Colleagues/Friends,

As you may know, Ms. Alice Cruz, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, will be presenting her second thematic report (available on the OHCHR website, 

https://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session41/Pages/ListReports.aspx) to the forthcoming session of the Human Rights Council on 24 June 2019 around 12.00 Geneva Time. The presentation will be followed by interactive dialogue with the delegates. The proceedings will be live telecast and can be watched on the following link (http://webtv.un.org/live/). We hope that you will be able to follow the presentation and interactive dialogue and disseminate the report amongst your networks.

We wish to thank you for your support to the mandate.

 Best regards,

Secretariat

OHCHR- Geneva

 

Français

Chers collègues et amis,

 Mme Alice Cruz, Rapporteur Spécial sur l'élimination des discriminations envers les personnes atteintes de la lèpre et leur famille, présentera son deuxième rapport thématique (disponible sur le site web du HCDH,

https://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session41/Pages/ListReports.aspx ) à la prochaine session du Conseil des droits de l'homme du 24 juin 2019 vers 12:00, heure de Genève. La présentation sera suivie d'un dialogue interactif avec les délégués. L'événement sera retransmis à la télévision et peut être suivi à partir du lien suivant (http://webtv.un.org/live/).

Nous espérons que vous pourrez suivre la présentation et le dialogue interactif, et que vous diffuserez le rapport dans vos réseaux.

Nous aimerons vous remercier pour votre soutien du mandat.

Meilleures salutations,

Secretariat

OHCHR- Geneva

Español

 Estimados colegas/amigos,

Como quizás sea de su conocimiento, Sra. Alice Cruz, la Relatora Especial sobre la eliminación de la discriminación contra las personas afectadas por la lepra y los miembros de sus familias, presentará su segundo informe (disponible en la pagina del EACDH, 

https://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session41/Pages/ListReports.aspx) en el próximo período de sesiones del Consejo de Derechos Humanos, el 24 de junio de 2019 a las 12.00 Hora de Ginebra. Después de la presentación se continuará con un diálogo interactivo con los delegados. Los debates serán retransmitidos en directo y se podrán ver en el siguiente enlace (http://webtv.un.org/live/). Esperamos que puedan seguir la presentación y el diálogo interactivo y divulgarlo entre sus redes.

 Les agradecemos su apoyo al mandato.

 Atentos saludos

Secretariat

OHCHR- Geneva

 

Português

Cara/os companheira/os,

 Como talvez saibam, Sra. Alice Cruz, a Relatora Especial para a eliminação da discriminação contra as pessoas atingidas pela hanseníase e seus familiares, apresentará o seu segundo relatório temático (disponível na página do EACDH, https://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session41/Pages/ListReports.aspx )na próxima sessão do Conselho de Direitos Humanos a 24 de Junho de 2019 por volta das12.00 Hora de Genebra. À apresentação seguir-se-á um diálogo interactivo com os delegados. Estes acontecimentos serão transmitidos em directo e poderão ser vistos na seguinte ligação (http://webtv.un.org/live/). Esperamos que possam seguir a apresentação e o diálogo interactivo e disseminar ambos nas vossas redes.

Queremos agradecer-vos pelo vosso apoio ao mandato.

Atentamente,

Secretariat

OHCHR- Geneva

Mandate's website: www.ohchr.org/EN/Issues/Leprosy/Pages/LeprosyIndex.aspx 


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

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

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


Friday, June 14, 2019

FW: (LML) The day I changed my name: leprosy and stigma

 

 

 Leprosy Mailing List – June 14,  2019

Ref.:   (LML)  The day I changed my name: leprosy and stigma

From:  Patricia Deps, Vitória, Brazil


 

Dear Dr. Schreuder,

I would like to inform our colleagues about the following events, if possible.

Book launch of the medical anthropology book entitled "The day I changed my name: leprosy and stigma" on 26 June 2019, 18-19h at the Librairie de Boccard in Paris.

Please see the invitation and book details in the attached file. Confirmation until 15 June 2019.

Conference of medicine and anthropology entitled "Brazil: the country that changed the name of leprosy" during the Colloque Regards Culturel et Sociaux Autour des Épidémies, on 27 June 2019, from 9-18h, at the Musée du Quai Branly in Paris.


See details at: 
http://www.quaibranly.fr/fr/recherche-scientifique/activites/colloques-et-enseignements/colloques/details-de-levenement/e/regards-culturels-et-sociaux-autour-des-epidemies-38301/

This conference is about the work of Abrahan Rotberg and his fight against the use of the term "leprosy and leprosy" on medical practice.


Yours sincerely,

Patricia Deps, MD, MSc, PhD
Dermatologist/Leprologist
Associate Professor
Department of Social Medicine
Federal University of Espirito Santo
Vitória-ES-Brazil

Honorary Visiting Researcher
Hopital de Nanterre
Catacumbes de Paris
Musée du Quai Branly
Paris - France

Mobile: +33 (0) 766092430
             +55 27 99999 6390


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

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

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

 

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Tuesday, June 11, 2019

(LML) Recurrence rate among MB patients following RFT

Leprosy Mailing List – June 11,  2019

Ref.:    (LML) Recurrence rate among MB patients following RFT

From:  Joel Almeida, London and Mumbai


Dear Pieter,  

Thanks to Dr. Kawuma for describing the situation in Africa.

I would like to share encouragement regarding finances. Once there is a demonstrably effective intervention, money tends to start flowing more freely. Financial backers, whether governments or foundations or lotteries or even noble individual philanthropists etc., like to have a clear picture of what we are proposing, and why it is likely to work. They are moved by compassion and would love for transmission to be interrupted, so that no more lives unnecessarily are blighted by visible deformity and the consequent ostracism, destitution, homelessness, psychological problems and worse. 

We, too, are compassionate. We, too, want to avert human suffering. We have the advantage of using our scientific skills to identify what works and what does not.

Shandong achieved a 15% annual decline in new MB patients using prolonged anti-microbial treatment. Post-MDT chemoprophylaxis for LL patients using 2 or 3 bactericidal drugs monthly is as effective as the treatment used in Shandong, and probably even more effective. Shandong achieved near-zero transmission, and so can we.


Shandong ensured anti-microbial protection for LL patients for 5 years after "clinical cure" followed by 5 years of annual observation. (1)

"Criteria for cure were as follows: 

a) complete disappearance of lesions, 

b) no nerve tenderness and/or leprosy reactions for at least one year, 

c) six consecutive negative smears within one year for multibacillary patients and negative smears before and after therapy for paucibacillary patients, and 

d) only nonspecific inflammation in biopsies taken from formerly active lesions."

Recurrences were treated according to the regimen for new patients. 

We can tweak such criteria for use in our own areas, bearing in mind what facilities are available. More facilities can eventually be made available as financing grows. As the endemicity declines, the risk of re-infection also declines. In non-endemic areas the risk of re-infection is near zero.

Shandong persisted with prolonged anti-microbial protection even in the MDT era, ignoring the global fashion for fixed-duration MDT.(2) That local practice protected LL patients against recurrence and allowed Shandong to achieve near-zero transmission. It is one of the great success stories in the history of public health. Zero transmission is a highly attractive proposition to governments and other investors.

We know how Shandong achieved near-zero transmission. We intend to match that achievement. That's why we need more money. This can be our clear message to all the governments, taxpayers, individual donors, philanthropists, foundations, organisations etc. Our call for increased financing is founded on demonstrable success.

Besides, post-MDT chemoprophylaxis is part of competent case management for LL patients. They are the most prone to visible deformity. It is unwise to neglect them. We would like to reduce the cumulative recurrence rate among LLp patients from as high as 75% to 0%, by using post-MDT chemoprophylaxis for all LL patients. It is how we propose to match Shandong's victory. 

We have a clear offer to the world: interruption of transmission at source, through improved long-term case management of LL patients.

Finding money is usually not the problem once a demonstrably effective intervention is available. I speak from first-hand experience, having served as the policy specialist and global media spokesperson for WHO HQ's Global TB Programme. Global financing for TB went from about USD100 million per year to several billion USD per year. Even low-income country governments chipped in. It is important to have a demonstrably effective intervention. We can all take courage, because the efficacy of post-MDT chemoprophylaxis is likely to be nearly 100%, matching the efficacy of Shandong's prolonged anti-microbial treatment.

Post-MDT chemoprophylaxis can start with LL patients who are already known to us and accessible. It seems wise to include probably-LL patients too, instead of leaving them out in areas with very limited facilities. This intervention requires far less than billions of USD. We can make a start and create new success stories to match Shandong's victory. 

Dr. Styblo, one of my biggest heroes, developed and demonstrated an effective TB management system in Tanzania. He just went ahead and did it, on a shoestring budget relying on quarterly donations. That started the ball rolling for TB. Fortunately Dr. Kochi at WHO HQ identified this system as the key transformative intervention in TB. Then we, at WHO, kept evolving and tweaking the effective management system and adapting it to various situations around the globe with the input of local communities. Step by step, it was adopted across the world, forming a life-saving global cocoon. I myself travelled to the frontlines in several countries, reviewing practices and training people. There was no shortage of scepticism ("just another Sheraton programme") but I saw how that changed to delight once outcomes were demonstrated. When President Clinton visited India, he was taken to only one health project. It was the public-private mix TB project, the very first pilot project of an intervention that I designed at WHO and then launched with local partners in Hyderabad. Only a few years earlier, sceptics had assured us that it would not work. Instead, we produced better outcomes than most other
approaches. Demonstration is the best answer to scepticism. I mention all this only to encourage the doers here as we move forward. We can dare to dream based on careful analysis of the evidence, and we know how to make this particular dream of near-zero transmission come true. 

Once we start acting and the incidence rate of new MB patients starts declining, money will start to chase us instead of the reverse. We don't need to have everything perfect before we start, we need just to make a start and then keep tweaking the intervention. That's how effective programmes are developed, from tiny seeds, into great life-giving trees. Effective action attracts money which attracts more action and so on. One willing leader in one place and one compassionate, enlightened donor suffice to start this revolution against the bacilli. Victory is highly likely, given Shandong's measurable success.

What about adverse effects? The consequences of unchecked bacilli tend to be more frequent and severe than the unintended adverse effects of monthly drugs. Even in low-income settings, and especially there. However, we can certainly stay alert to any symptoms and signs reported by patients, and keep tweaking our post-MDT chemoprophylaxis regimens to minimise any unintended adverse effects. Prof. Frankel would probably appreciate that.

Mahatma Gandhi graces the front page of the Indian national programme's website. This quote from Gandhi expresses what many of us practice: "Recall the face of the poorest and weakest man you have seen, and ask yourself if this step you contemplate is going to be any use to him." We can continue to follow Gandhi's noble example, recalling the faces of women, children and men disfigured unnecessarily, as we strive to protect human limbs, eyes, minds, relationships, educations and livelihoods from the unnecessary ravages of the bacilli. Each of us has an inner Mahatma (great soul). Let's draw on that to accelerate our success. Shandong showed us the way to success. Now we too can do it.

Joel Almeida


Translations

हम जानते हैं कि शांडोंग ने शून्य संचरण कैसे प्राप्त किया। हम भी ऐसा करना चाहते हैं। इसलिए हमें अधिक वित्तपोषण की आवश्यकता है। यह सभी सरकारों, करदाताओं, व्यक्तिगत दाताओं, परोपकारी, नींव, संगठनों आदि के लिए हमारा स्पष्ट संदेश हो सकता है। पर्याप्त धन के लिए हमारा अनुरोध शांडोंग में प्रदर्शनकारी सफलता पर आधारित है।

हम भी एलएल रोगियों के लिए एमडीटी के बाद कीमोप्रोफिलैक्सिस का उपयोग करके शांडोंग की तरह शून्य संचरण प्राप्त कर सकते हैं। एमडीटी के बाद मासिक अंतराल पर एलएल मरीजों को 3 जीवाणुनाशक दवाएं देकर हम शांडोंग की तरह सफल हो सकते हैं।


Nós sabemos como Shandong conseguiu quase zero transmissão. Nós também queremos fazer isso. É por isso que precisamos de mais financiamento. Esta pode ser a nossa mensagem clara para todos os governos, contribuintes, doadores individuais, filantropos, fundações, organizações, etc. O nosso pedido de financiamento adequado baseia-se num sucesso demonstrável em Shandong.

Podemos alcançar quase zero transmissão usando quimioprofilaxia após MDT para pacientes com LL. 3 drogas bactericidas mensais são tão eficazes quanto o tratamento longo usado em Shandong. Shandong conseguiu quase zero transmissão dessa maneira. Nós também podemos fazer isso.
 

Nous savons comment le Shandong a atteint une transmission presque nulle. Nous voulons le faire aussi. C'est pourquoi nous avons besoin de plus de financement. Cela peut être notre message clair à tous les gouvernements, contribuables, donateurs individuels, philanthropes, fondations, organisations, etc. Notre demande de financement adéquat est basée sur le succès démontrable du Shandong.

En donnant la chimioprophylaxie après PCT aux patients LL, nous pouvons atteindre une transmission presque nulle. Trois médicaments bactéricides par mois sont aussi efficaces que le traitement de longue durée utilisé dans le Shandong. Le Shandong a réalisé une transmission presque nulle de cette manière. Nous aussi pouvons le faire.


References

1. Li HY, Pan YL, Wang Y. Leprosy control in Shandong Province, China, 1955-1983; some epidemiological features. Int J Lepr Other Mycobact Dis. 1985 Mar;53(1):79-85

2.2. Li HY, Weng XM, Li T et al. Long-Term Effect of Leprosy Control in Two Prefectures of China, 1955-1993. Int J Lepr Other Mycobact Dis. 1995 Jun;63(2):213-221.


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

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

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