Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 30,  2022

 

Ref.:  (LML) LML sessions at ILC 2022

 

From:  Santoshdey Rathod, Ahmedabad, India

 

Dear colleagues,

 

To me this question seems to be most relevant:

 

'Are ILEP members by their effort to raise money not increasing the stigma? How do you raise the money needed for care when the WHO and governments fail?'

 

Just a context: "How a beggar uses his deformity to demand money on the street". When we as  learned members 'talk and discuss about stigma'. Most of the times; unknowingly we are accepting and encouraging more stigma towards a leprosy affected person.

 

'Stigma' should not be a 'leveraging tool' for generating funds. There has to be/should be  healthy ways to generate funds for NGOs and related organisations.

 

1. We can do comparative analyses of money spent on other infectious diseases, say 'HIV' and/or 'Tuberculosis'.

2. Economic loss to the PAL is well studied and prevention of this Economic loss could be highlighted.

3. It is more about owning up responsibility of leprosy care by the governments as have seen recent government involvement in COVID 19 illness. 

4. We have to accept and show the truth that 'Leprosy is still a concern and not an eliminated disease.'

 

I am posting these suggestions in good faith and kudos to the people who thought of this question because this aspect needs to be discussed.

 

Humble regards,

 

Dr. Santoshdev Rathod

Deputy Medical Superintendent, SCL General Hospital

Professor of Dermatology, Smt . NHL MMC, Ahmedabad

Joint Scientific Secretary, ILC 2022.

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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Fw: Ref.: (LML) Registration of persons affected by leprosy in ILC 2022

 

Leprosy Mailing List – July 29,  2022

 

Ref.:  (LML) Registration of persons affected by leprosy in ILC 2022

From:  P. Narasimha Rao, Hyderabad, India

 

Dear Pieter,

 

Thank you for publishing the information about the ILC registrations to persons affected by leprosy in LML.   We are already getting responses/ queries  from many organisations.   

 

But unfortunately,  the excel sheet attachment was missing in that email. Hence, in the same thread, I request you to share this excel sheet format to all our readers, so that they can send the information in the desired format needed to proceed further. 

 

Please find the  revised excel sheet attached herewith.  Hope it will be possible. 

 

Thanks and regards. 

 

P. Narasimha Rao, MD, D.D, PhD

 

Organising Secretary, 21st International Leprosy Congress. 2022

President, Indian Association of Leprologists (IAL) 

Past President, National IADVL- 2019

Coordinator, SIG-NTD, IADVL 2021-23

 

Professor of Dermatology, 

Bhaskar medical college,

Hyderabad, India

 

Mobile-+91-9849044898

Email: dermarao@gmail.com

www.ial-leprosy.org

www.ilc-india2022.com

 

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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Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 29,  2022

Ref.:  (LML) LML sessions at ILC 2022

From: Editorial Board LML, Maastricht, the Netherlands

 

Dear Ben, Sunil, Salvatore and Pieter,

 

Thank you for the LML mail of July 29th.

 

For the topics to be discussed you have already listed a number.

 

Please forgive me to suggest to re-formulate some of these:

 

• Are patients having unhampered access to proper leprosy care at health clinic and hospital level.
• Is the level of knowledge offered at these institutes adequate for (1) an early and correct diagnosis of leprosy, (2) for the early detection and treatment of neuritis and immune reactions / relapse, (3) the treatment and prevention of ulcers and deformities?
• Neuritis;  State of the Art; any progress made in its treatment since the last ILC?
• The need for (sample?) surveys in former highly endemic areas.  

 

With best wishes,

 

Wim Theuvenet

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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Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 29,  2022

 

Ref.:  (LML) LML sessions at ILC 2022

 

From:  Editorial Board LM, Maastricht, the Netherlands

 

Dear colleagues,

Compared to even ten years ago, the governments are playing a much bigger role in leprosy control while the role played by ILEP associations has decreased and seems to be steadily decreasing. Organizations of affected persons are there but they mostly represent decreasing numbers of old disabled patients, while the new affected persons have less disabilities and lack the "leprosy identity", so often they do not wish to join them. 

Even ILEP associations are depending upon the governments in Europe to fund their work and most of the funding comes for NTDs or combined programs while few leprosy-only projects get any institutional funding. All these factors combined mean that their impact on influencing government policies and programs has decreased and is decreasing. In this scenario, the best way to influence governments is through professionals and through WHO. Bodies like ILA, as well as discussion forums like LML, play an important role in this situation.

For the LML session on the ILC in Hyderabad, a number of proposals have been received. All are very worthwhile to discuss. 

• Quality of clinical care during treatment and particularly after treatment; too many continue to deteriorate after being diagnosed. 
• In this context. the financing by governments and NGOs should be addressed.  
• The representation of leprosy patients.  Who and what do they represent? 
• Are ILEP members by their effort to raise money not increasing the stigma? How do you raise the money needed for care when the WHO and governments fail? 
• Epidemiology: why does the present approach not work?  
• What can be said about the Skin STD approach proposed by WHO? 

 

Our proposal is to prepare more detailed questions on the above-mentioned points, collect answers (including observations and experiences) and ask experts to debate. 

LML will have a formal one-hour session during the regular physical/virtual ILC 2022 congress. A more informal session would be welcome for example in the evening or just before the congress.  

Considering our discussion points, we have to consider how we could make optimal use of the time available.  

Are there any comments (suggestions) among the LML readers? Which points are the most important? 

 

 

Best regards,

 

 

Ben Naafs

Sunil Deepak

Savatore Noto

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

 

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Fw: Ref.: (LML) Problems encountered in the field

 

Leprosy Mailing List – July 28 ,  2022

 

Ref.:  (LML) Problems encountered in the field

From: Kerstin Beise and Al Kadri, PerMaTa South Sulawesi – YDTI, Makassar, Indonesia

 

Dear Pieter,

Referring to the inquiry by Joseph Kawuma, Kampala, Uganda (LML, 26-07-2022), whether instances of neglect are the result of a systematic investigation or survey.

All information we have about lack of services after RFT are the results of home visits by the PerMaTa South Sulawesi-YDTI to persons affected by leprosy after RFT, based on information from the health centres and supported by international donors as part of other project activities. They are not the result of a systematic investigation.

We have been looking for funds for such an investigation for a long time, but so far without success. We believe that the lack of data is one of the reasons for the lack of services. If you are interested, Joseph, I am happy to share a research proposal that we have written in this regard (contact us under ydti.info@gmail.com).

Thank you for your support and interest.

Kind regards,

Kerstin Beise, Al Kadri

 

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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Fw: Ref.: (LML) Registration of persons affected by leprosy in ILC 2022

 

 
Leprosy Mailing List – July 27,  2022

 

Ref.:  (LML) Registration of persons affected by leprosy in ILC 2022

 

From:  P. Narasimha Rao, Hyderabad, India

 

 

Dear Pieter,

 

There have been several enquiries and mails regarding how persons affected by leprosy could attend ILC 2022 and the fee issues in LML. Similar queries were received from a few other agencies as well. 

 

We have taken up this issue and I am happy to inform the members that the Organising committee of ILC 2022 has decided to offer a maximum of 100 E-registrations (E-delegates) free of charge to Persons affected by leprosy to attend the Congress across the globe.  It will facilitate their attending and participating in virtual congress, as well as be an audience to the proceedings of the physical congress live transmission.  

 

How to nominate Persons affected by leprosy to the congress: Broad guidelines on who can be nominated are as follows;

• Associations/ stakeholders/ agencies/ programme managers of any country, where leprosy is prevalent can nominate 'persons affected by leprosy' for the congress. 
• Each country's leprosy organisations / stakeholders can nominate a maximum number of 3 persons affected by leprosy to ILC 2022. 
• Ideally the organization should choose a nominee whose participation and attending the congress would benefit him/her,  their organisation or programme in general.
• As the language of the Congress is English, the nominee should be able to understand English.  However, note that ILC virtual congress is planning to have a couple sessions in French and Portuguese as well. 
• The nominees whose abstracts are accepted should be preferred over others. 

How to nominate: 

Please send the details of the list of nominees in the excel format attached, along with the details of your organisation and country  along with a covering letter to  <ilc2022india@gmail.com>

 

I request you to post this information in the LML group. 

 

Best Regards, 

 

 

P. Narasimha Rao, MD, D.D, PhD

 

Organising Secretary, 21st International Leprosy Congress. 2022

President, Indian Association of Leprologists (IAL) 

Past President, National IADVL- 2019

Coordinator, SIG-NTD, IADVL 2021-23

 

Professor of Dermatology, 

Bhaskar medical college,

Hyderabad, India

 

Mobile-+91-9849044898

Email: dermarao@gmail.com

www.ial-leprosy.org

www.ilc-india2022.com

 

 

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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Fw: Ref.: (LML) Problems encountered in the field

 

Leprosy Mailing List – July 26,  2022

 

Ref.: (LML) Problems encountered in the field

 

From:  Joseph Kawuma, Kampala, Uganda

 

 

Dear Pieter,

 

I refer to the submission by Kerstin Beise and Al Kadri in LML of July 14th.

 

Are the instances being referred to the result of a systematic investigation or survey or are they observations made in the course of some other activity?

 

I have a feeling that they are issues arising elsewhere (beyond Indonesia) chance the reason why I am interested in the methodology used for collecting the information.

 

Best wishes

 

H Joseph Kawuma,

Uganda

 

Note editor: may I also refer to the recent contributions "The agenda of the upcoming ILC and problems encountered in the field do not overlap" made by Wim Theuvenet, Sunil Deepak and Henk Eggens?

 

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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Fw: Ref.: (LML) New Publications On Cross-Cutting Issues In NTDs. July, 2022.

 

Leprosy Mailing List – July 22,  2022

 

Ref.:  (LML) New Publications On Cross-Cutting Issues In NTDs. July, 2022.

 

From:  Roos Geutjes, Amsterdam, the Netherlands

 

 

Dear colleagues, 

World Health Organization (WHO) and the Bill & Melinda Gates Foundation today announced plans to set up a mentorship programme for African women working in neglected tropical diseases programmes. The mentorship is in honour of the late Dr Mwele Malecela, who was one of Africa's most highly respected female scientists and public health leaders. Scroll down to find more information.

Enjoy reading the selection of the latest NTD publications that are listed below. We offer free full text delivery services. Feel free to contact us to receive the full-text versions if these cannot be found through the InfoNTD portal. We will also gladly support you with literature searches. 


Warm regards,
Roos Geutjes

InfoNTD Coordinator
www.InfoNTD.org
info@InfoNTD.org
 

 

 

Practical materials

 

The gender pay gap in the health and care sector a global analysis in the time of COVID-19
World Health Organization. World Health Organization. 2022
 

Subsidizing global health: Women's unpaid work in health systems
Women in Global Health . 2022.
 

WHO GUIDELINE for the treatment of visceral leishmaniasis in HIV co-infected patients in East Africa and South-East Asia
World Health Organization . World Health Organization. 2022.
 

Leprosy: clinical features and treatment (online course)
Lockwood DN. HS Talks. 2022.
 

Leprosy: epidemiology, pathology, immunology, prevention of disability and stigma (online course)
Lockwood DN. HS Talks. 2022.
 

Wash'Em Online Courses
WASH'em. 2022.
- Delivering Blended Online Wash'Em Training
- Wash'Em: Self-Study
 

 

 

NTDs & COVID-19

 

COVID-19 and Neglected Diseases in the face of inequalities in Brazil: a matter of sustainable development
Diniz DS, Teixeira EDS, Almeida WGRD, et al. FapUNIFESP (SciELO). Saúde em Debate. 2021; 45 (spe2) : 43-55.
 

Mass drug administration for lymphatic filariasis elimination amidst COVID-19 pandemic in Odisha, India: A step towards achieving SDG-3
Sinha A, Mohapatra S, Mohanty S, et al. SAGE Publications. Tropical Doctor. 2022.
 

The effect of compliance to Hand hygiene during COVID-19 on intestinal parasitic infection and intensity of soil transmitted helminthes, among patients attending general hospital, southern Ethiopia: Observational study
Seid M, Yohanes T, Goshu Y, et al. Public Library of Science (PLoS). PLOS ONE. 2022; 17 (6) : e0270378. 
 

Sustaining communicable disease elimination efforts in the Americas in the wake of COVID-19
Espinal MA, Alonso M, Sereno L, et al. Elsevier BV. The Lancet Regional Health - Americas. 2022. 
 

 

 

Other new publications

 

Mental health stigma and discrimination in Ethiopia: evidence synthesis to inform stigma reduction interventions
Girma E, Ketema B, Mulatu T, et al. Springer Science and Business Media LLC. International Journal of Mental Health Systems. 2022.
 

A syndemic born of war: Combining intersectionality and structural violence to explore the biosocial interactions of neglected tropical diseases, disability and mental distress in Liberia
Dean L, Theobald S, Nallo G, et al. Public Library of Science (PLoS). PLOS Global Public Health. 2022; 2 (6) : e0000551. 
 

Stigma, psychosocial and economic effects of yaws in the Philippines: an exploratory, qualitative study.
Dofitas B, Kalim S, Toledo C, et al. Tropical medicine and health. 2022; 50 (1) : 43. 
 

Conditional cash transfers for neglected tropical diseases
Savioli L. Elsevier BV. The Lancet Global Health. 2022; 10 (8) : e1097. 
 

New declaration on neglected tropical diseases endorsed
Burki T. Elsevier BV. The Lancet. 2022; 400 (10345) : 15. 
 

Scaling up of tsetse control to eliminate Gambian sleeping sickness in northern Uganda.
Hope A, Mugenyi A, Esterhuizen J, et al. PLoS neglected tropical diseases. 2022; 16 (6) : e0010222.
 

Diethylcarbamazine citrate-fortified salt for lymphatic filariasis elimination in India.
Sabesan S, Krishnamoorthy K, Hoti S, et al. The Indian journal of medical research. 2022.
 

To eliminate trachoma: Azithromycin mass drug administration coverage and associated factors among adults in Goro district, Southeast Ethiopia
Feyisa T, Bekele D, Tura B, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (6) : e0010169.
 

Accelerating pooled licensing of medicines to enhance global production and equitable access
Shadlen KC. Elsevier BV. The Lancet. 2022.
 

Ethical and practical considerations arising from community consultation on implementing controlled human infection studies using Schistosoma mansoni in Uganda
Egesa M, Ssali A, Tumwesige E, et al. Informa UK Limited. Global Bioethics. 2022; 33 (1) : 78-102. 
 

Reduction in DALYs lost due to soil-transmitted helminthiases and schistosomiasis from 2000 to 2019 is parallel to the increase in coverage of the global control programmes
Montresor A, Mwinzi P, Mupfasoni D, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (7) : e0010575. 
 

"Then they prayed, they did nothing else, they just prayed for the boy and he was well": A qualitative investigation into the perceptions and behaviours surrounding snakebite and its management in rural communities of Kitui county, Kenya.
Wood L, Ngari C, Parkito S, et al. PLoS neglected tropical diseases. 2022; 16 (7) : e0010579. 
 

Safety of Praziquantel and Albendazole Coadministration for the Control and Elimination of Schistosomiasis and Soil-Transmitted Helminths Among Children in Rwanda: An Active Surveillance Study
Kabatende J, Barry A, Mugisha M, et al. Springer Science and Business Media LLC. Drug Safety. 2022.
 

Using participatory action research to pilot a model of service user and caregiver involvement in mental health system strengthening in Ethiopian primary healthcare: a case study
Abayneh S, Lempp H, Kohrt BA, et al. Springer Science and Business Media LLC. International Journal of Mental Health Systems. 2022.
 

A participatory epidemiological and One Health approach to explore the community's capacity to detect emerging zoonoses and surveillance network opportunities in the forest region of Guinea
Guenin M, De Nys HM, Peyre M, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (7) : e0010462. 
 

REDCap mobile data collection: Using implementation science to explore the potential and pitfalls of a digital health tool in routine voluntary medical male circumcision outreach settings in Zimbabwe
Tran V, Gwenzi F, Marongwe P, et al. SAGE Publications. DIGITAL HEALTH. 2022.
 

Ethnic inequalities in access to WASH in Bangladesh
Alam MZ. Elsevier BV. The Lancet Global Health. 2022; 10 (8) : e1086-e1087. 
 

The African Medicines Agency: the key to unlocking clinical research in Africa
Hwenda L, Sidibe M, Makanga M. Elsevier BV. The Lancet Global Health. 2022; 10 (8) : e1088-e1089. 
 

Mapping of schistosomiasis and soil-transmitted helminthiases across 15 provinces of Angola
Mendes EP, Okhai H, Cristóvão RE, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (6) : e0010458. 
 

Interventions to improve water, sanitation, and hygiene for preventing soil-transmitted helminth infection
Garn JV, Wilkers JL, Meehan AA, et al. Wiley. Cochrane Database of Systematic Reviews. 2022.
 

 

The Eradication of Guinea Worm Disease: A Push for Community Engagement
Sharma R, Priven M, Kosinski K. Columbia University Libraries. The Columbia University Journal of Global Health. 2022.
 

Knowledge, Attitude, and Practice of Community towards an Onchocerciasis Elimination Program from South West Ethiopia
Worku H, Mola M, Alemu BD, et al. Hindawi Limited. Journal of Tropical Medicine. 2022.
 

Health work and skills in the last mile of disease elimination. Experiences from sleeping sickness health workers in South Sudan and DR Congo
Falisse J, Mpanya A, Surur E, et al. Informa UK Limited. Global Public Health. 2022.
 

Environmental impacts of mass drug administration programs: exposures, risks, and mitigation of antimicrobial resistance
Konopka JK, Chatterjee P, LaMontagne C, et al. Springer Science and Business Media LLC. Infectious Diseases of Poverty. 2022.
 

Mass drug administration of antibacterials: weighing the evidence regarding benefits and risks
Rolfe RJ, Shaikh H, Tillekeratne LG. Springer Science and Business Media LLC. Infectious Diseases of Poverty. 2022.
 

The WHO new guideline to control and eliminate human schistosomiasis: implications for the verification of transmission interruption and surveillance of Schistosoma japonicum in China
Xu J, Li S, Guo J, et al. Springer Science and Business Media LLC. Infectious Diseases of Poverty. 2022.
 

Urogenital schistosomiasis prevalence, knowledge, practices and compliance to MDA among school-age children in an endemic district, southern East Tanzania
Nazareth LC, Lupenza ET, Zacharia A, et al. Elsevier BV. Parasite Epidemiology and Control. 2022.
 

Historical overview and geographical distribution of neglected tropical diseases amenable to preventive chemotherapy in the Republic of the Congo: A systematic review
Ngatse JA, Ndziessi G, Missamou F, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (7) : e0010560.
 

The achievement of a storytelling about Chagas disease: how to talk about silence; how to visualise the invisible
Sancho Mas FJ. FapUNIFESP (SciELO). Memórias do Instituto Oswaldo Cruz. 2022.
 

 Reviewing the Past, Present, and Future Risks of Pathogens in Ghana and What This Means for Rethinking Infectious Disease Surveillance for Sub-Saharan Africa
Mahama PN, Kabo-Bah AT, Blanford JI, et al. Hindawi Limited. Journal of Tropical Medicine. 2022.
 

A mixed-methods exploration into the resilience of community drug distributors conducting mass drug administration for preventive chemotherapy of lymphatic filariasis and onchocerciasis in Côte d'Ivoire and Uganda
Dilliott D, Addiss D, Thickstun C, et al. Public Library of Science (PLoS). PLOS Global Public Health. 2022; 2 (7) : e0000700.
 

Ivermectin and albendazole coadministration: opportunities for strongyloidiasis control
Gandasegui J, Onwuchekwa C, Krolewiecki AJ, et al. Elsevier BV. The Lancet Infectious Diseases. 2022.
 

Teachers as multipliers of knowledge about schistosomiasis: a possible approach for health education programmes
Murta FLG, Massara CL, Rodrigues MG, et al. Research Square Platform LLC. 2022.
 

Economic and Social Costs of Noma: Design and Application of an Estimation Model to Niger and Burkina Faso
Mpinga EK, Srour ML, Moussa MA, et al. MDPI AG. Tropical Medicine and Infectious Disease. 2022; 7 (7) : 119. 
 

Global burden of disease study at the world health organization:
research methods for the most comprehensive global study of disease and
underlying health policies
Smith L, Shin JI, Hwang SY, et al. Life Cycle. Life Cycle. 2022.
 

Landscape analysis of NTD diagnostics and considerations on the development of a strategy for regulatory pathways
Choi HL, Ducker C, Braniff S, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2022; 16 (7) : e0010597.
 

Rehabilitation in Buruli Ulcer
Lehman LF, Yao KA. Springer International Publishing. Leprosy and Buruli Ulcer. 2022.
 

Spectrum of skin diseases in Maroon villages of the Maroni area, French Guiana
Valentin J, Niemetzky F, Gaillet M, et al. Wiley. International Journal of Dermatology. 2022.
 

Scarcity, Property Rights, Irresponsibility: How Intellectual Property Deals with Neglected Tropical Diseases
Astone DP. Springer Science and Business Media LLC. Law and Critique. 2022.
 

Traditional remedies and other characteristics among human snakebite survivors in Baringo county, Kenya, 2010–2020: a case series
Kung'u PN, Chweya RN, Gachohi JM. Oxford University Press (OUP). International Health. 2022.

 

 

 

Governance & Health Systems

 

Social innovation in health: concepts and practice
Tucker JD, Manderson L, Amazigo U, et al. BMJ. BMJ Innovations. 2022; 8 (3) : 133-136.
 

Building the social innovation for health ecosystem in Latin America: experiences and learning from SIHI-LAC
van Niekerk L, Echavarria MI, Alger J, et al. BMJ. BMJ Innovations. 2022; 8 (3) : 224-233
 

Health workers as agents of change and curators of knowledge
Crisp N, Poulter D, Gnanapragasam S, et al. Elsevier BV. The Lancet. 2022.
 

The sustainable health Agenda in the Americas: Pre-pandemic gaps and 2030 estimates of the SDGs indicators
Silveira F, da Matta Machado Fernandes L, Paes-Sousa R, et al. Public Library of Science (PLoS). PLOS ONE. 2022; 17 (6) : e0270301. 

 

 

 

News & Webinars

 

Webinar: How close are we to being able to diagnose leprosy in the field? (Recording)
Prof Dr Annemieke Geluk (immunologist) from the Leiden University Medical Centre (Dept Infectious Diseases) hosted this webinar on immunodiagnostics in partnership with The Leprosy Mission
 

Neglected Tropical Disease mentorship launched in honour of Dr Mwele Malecela
World Health Organization (WHO) and the Bill & Melinda Gates Foundation today announced plans to set up a mentorship programme for African women working in neglected tropical diseases programmes. The mentorship is in honour of the late Dr Mwele Malecela, who was one of Africa's most highly respected female scientists and public health leaders. Read more.. 
 

NTD NGO Network (NNN) Conference - Registration is open!
The NNN is delighted to announce that this year's NTD NGO Network (NNN) Annual Conference will take place from Tuesday 13th to Thursday 15th September 2022. 
The event will be in a Hybrid format, taking place in-person in Kathmandu, Nepal as well as some elements being streamed virtually. 
Have you registered for the conference? 

 

 

The 7th Global Symposium on Health Systems Research (HSR2022)
HSR2022 will explore the following sub-themes:

• The politics and policies of health systems
• Intersectoral collaboration and integrative governance on the road for health in all policies
• The changing dynamics of health provision models to promote equity and the central role of human resources for health
• The role of comprehensive primary care in promoting sustainability and the contribution of new technologies

Symposium date: Oct 31th - Nov 4th, Bogota 
 

World Water Week 2022 - Seeing the Unseen: The Value of Water.
Online you can join us in two stints: first 23-25 August and then 29 August to 1 September. If you prefer to come to Stockholm, we welcome you from the 28 August when the first day will be filled with on-site sessions. Between 29 August and 1 September, everything can be followed both online and on-site in Stockholm.
Date: August, 23rd - Sep, 1st

 

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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

 

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Fw: Ref.: (LML) Integrated Framework for Skin NTDs

Leprosy Mailing List – July 14, 2022

Ref.: (LML) Integrated Framework for Skin NTDs

From: Sunil Deepak, Schio, Italy



Dear Pieter,


In June 2022, WHO has launched the integrated framework for the management of skin-related non-tropical diseases (Skin NTDs), which include leprosy along with Buruli ulcer, cutaneous leishmaniasis, lymphatic filariasis, onchocerciasis, etc. It can be downloaded from the link: https://apps.who.int/iris/rest/bitstreams/1430467/retrieve

I would like to hear from LML members their opinions regarding this new framework. I have a few quick remarks/questions regarding this framework:

 

(1) This framework wants to bring together the control of the identified skin conditions and its aim is to get this framework adopted in a certain number of countries by 2030. Compared to the combined leprosy-TB programmes in the past, this sounds like a more logical approach towards the control of these conditions. I remember prof. Ryan's advocacy for such an approach for so many years. However, in terms of the present organisation of leprosy services in the health ministries, what kind of challenges this approach is going to pose?

 

(2) Among the strategies, it includes combined active case detection for all the identified conditions through district teams, who will need to be trained through adequate combined training materials. WHO has produced a manual for front-line workers in this regards (link below). This would raise the issue of funding and I am not sure if in the present scenario, that would be feasible. Download Link: https://apps.who.int/iris/rest/bitstreams/1138601/retrieve

 

(3) Annex 4 of the Framework, also deals with lab diagnosis of the different skin NTDs. For leprosy it mentions slit skin smear and skin biopsies. Hopefully with combined lab diagnosis services for the different skin NTDs, this would become more feasible compared to the past.

 

(4) Annex 9 of the Framework is about disease-specific targets. It has targets for maximum number of new cases for leprosy - 148,000 in 2023, 123,500 in 2025 and 62,500 by 2030. I imagine that the countries with major leprosy burden will also be asked to have their own targets. There is the issue of diagnosed cases versus actual cases in the communities.

Secondly, as had happened (and continues to happen), when countries are asked to meet specific targets, health workers risk being seen as "bad workers" if they find more than the target number of new cases, so I would also like to know what safeguards can be put in place so that artificial changes in data or hiding of new cases does not happen or is minimised.

 

With best wishes,

 

 

Sunil

 

Dr Sunil Deepak

Schio (VI), Italy

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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Fw: Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

 

 

Leprosy Mailing List – July 14,  2022

 

Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

From:  Kerstin Beise and Al Kadri, PerMaTa South Sulawesi – YDTI, Makassar, Indonesia

Dear Pieter,

In reply to the mail from Sunil Deepak on access to leprosy services in Indonesia,

Greetings From PerMaTa South Sulawesi – YDTI in Indonesia. Health and rehab services for persons affected by leprosy in Indonesia have been getting worse over the past 10 years. Allow us to briefly share our perspective on this.

Main reasons are

1. The regulations of the UHC system in Indonesia, that do not recognize the need for any accommodations in the rehabilitation and care of persons affected by leprosy after RFT.
2. The worldwide practice to declare leprosy eliminated as a public health problem, resulting in a lack of funds and capacities.
3. The transformation of the three former referral hospitals for leprosy into general hospitals.

These led to a serious lack of knowledge about and access to treatment of reactions, wound care, septic and reconstructive surgery at all levels from health center to provincial to national level (apologies to those in Indonesia who still have this knowledge and are committed to keep it this way!).

Orthopaedical shoes that used to be free, now cost 2 million rupiah ($133) because UHC policy says so.

We visited a young man just today, in a district 4 hours from Makassar with severe reactions, unable to walk, covered in sores, pointed out by the health center where the leprosy worker is at a loss as to where to refer him.

We can go on with examples.

 

When NLR phased out their strong rehabilitation support, the idea was that inclusive and community-near services would develop. However, due to a lack of awareness, stigma is still a major barrier to accessing health services close to where a person lives. Worse still, leprosy-specific services are almost non-existent on district level. Therefore, people have to travel to the province's former leprosy hospitals.

As much as these want to help, they are severely limited by what the UHC system is able to cover. For example, inpatient ulcer care is generally covered for only 3 days before people are send back to their home districts, where services are not available. Physiotherapy and protheses fitting is only provided as an outpatient service. Most people affected by leprosy can hardly afford the trip to the province hospital, let alone stay in a guesthouse while undergoing outpatient therapy or daily wound care. That is why the wards of the large former leprosy hospital in Makassar are empty: not because there are no more patients, but because these patients cannot come and cannot be admitted.

One of our main request here is that the UHC system recognizes that people affected by leprosy need (reasonable) accommodation based on the Indonesian Disability Law / CRPD. For example, due to the combined factors of stigma, poverty and sensory loss, some require longer periods of inpatient care than other patients would.

 

Thank you, best wishes,

 

Al Kadri, Kerstin

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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Fw: Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

Leprosy Mailing List – July 13,  2022

 

Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

From:  Henk Eggens, Santa Comba Dão, Portugal

 

Dear Pieter and all,

Greetings from Portugal.

I am following the conversation after Wim Theuvenet's observations.

I am working on a response on Wim's point on his findings in Indonesia concerning the lack of access and insufficient utilisation of secondary health services for leprosy patients. But I am not getting there.

Most endemic areas, I suspect, suffer from incomplete access and suboptimal utilisation of leprosy services. It seems logical that the performance in leprosy services would correspond more or less with the performance in general health services. Unless leprosy is an extremely neglected disease in an endemic country.

How can one demonstrate a more objective view of the state of affairs?

I am thinking of relating leprosy service performance to the UN  Sustainable Development Goal (SDG) 3, specifically Indicator 3.8.1: Universal Health Coverage (UHC) service coverage index. Access to leprosy services and its effective utilisation should be at least at par with the performance of general health services. Actually it should do better than general health services, leprosy being a neglected disease.

Since I retired as a half-baked epidemiologist I am struggling with the right indicators for access to leprosy services and effective utilisation.

Real, population-based, incidence or prevalence rates are not available for leprosy, I think.

So far I came up with the usual suspects:
1. Disability grade 2 (DG2) at diagnosis as an indicator for early case detection.
2. MDT completion rates by cohort.
3. Proportion of patients without deterioration of DG at the end of MDT  as an indicator for effective utilisation of services (a very rough indicator).

These indicators should follow the trend in line with Indicator 3.8.1. of the SDG.

For instance, the Indonesian UHC service coverage index rose from  22 in 2000 to 59 in 2019. (The index unit is not given, as it is a result of 14 indicator values).
https://data.worldbank.org/indicator/SH.UHC.SRVS.CV.XD?end=2019&locations=ID&start=2000&view=chart

So, in simple reasoning, performance in leprosy service access and utilisation should at least have risen with the same trend.

And then there is the point of limited access due to governments' financial policies for health services, as Wim mentioned for Indonesia and probably apply in more countries.

I am not even mentioning the necessary non-medical interventions to improve quality of life for (ex-) leprosy patients.

How to compare these general health service performance indicators with leprosy service performance indicators?

I am still at a loss.

It looks like a good operational research topic.

Just sharing my struggle with you. Any ideas?

Best wishes,

Henk Eggens

 

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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Fw: Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

 

Leprosy Mailing List – July 13,  2022

 

Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

From:  Sunil Deepak, Schio, Italy

 

 

Dear Pieter,

 

Our on-going discussions with Ben, Salvatore and Wim are raising some important issues regarding ILC. I would like to touch on 2 points which had emerged in our discussions:

 

(1) Impact of payments on access to leprosy services: This issue has been regarding the situation in Indonesia. It might be useful to hear from persons from leprosy services and users in Indonesia regarding this subject.

 

I am also wondering if there are other countries where cost-related barriers may be affecting the access to leprosy services? I had heard something along these lines in China some ten years ago, but I am not sure if that is an issue today.  Persons from other countries can share information about introduction of paid access to leprosy services and its impact?

 

I also wonder if any research has been done and any articles have come out on this subject?

 

(2) Participation of persons affected with leprosy in the Congress: The issues about promoting the participation of persons affected with leprosy in the congress and the barriers they face in terms of registration fee, even for online participation, have also been raised. I know that ILEP and Sasakawa both support participation of delegates, especially through IDEA and national organisations. In Manila, there were about 50 persons affected with leprosy. They also had some parallel sessions and specific meetings.

 

Free access and waiving of registration fees for one group is likely to raise similar demands from others, specially from personnel working in field programmes. It might be an easier option for the organising committee to put recordings of all sessions on YouTube or the congress site for people to watch. However, that is my personal opinion. Perhaps someone from the ILC organising committee can answer this? 

 

On the other hand, bringing persons from countries who are excluded from these groups, can be a useful thing in promoting discussions about the specific issues they are facing today, but I have no idea how we can play a role in it.

 

Warm regards,

 

Sunil 

 

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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Fw: Ref.: (LML) Infolep monthly overview of new publications on leprosy - Jul '22

 

 
Leprosy Mailing List – July 13,  2022

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy - Jul '22

 

From:  Anniek Akerboom, Amsterdam, the Netherlands

 

Dear colleagues, 

In the past month, the Kigali Summit took place. World leaders gathered in Rwanda and made firm commitments towards ending NTDs by the end of the decade. Click here to read the official Summit Outcome Statement.

The WHO launched the strategic framework for the integrated control and management of skin NTDs. The framework emphasizes an integrated approach to enable countries to tackle the morbidity, disability and psychosocial impact of skin NTDs by identifying areas, key partners and resources. Click here to watch the official launch of the framework.

The Leprosy Research Initiative (LRI) published recordings from their Annual Spring Meeting 2022 that took place 7 and 8 April. Go to the LRI website >> to watch the sessions you were unable to attend or to relive some of your LRI Spring Meeting moments.

Enjoy reading the latest publications on leprosy and have a look at the upcoming events below. Also, I would be happy to assist you with literature searches on Infolep.

Warm regards,

Anniek Akerboom

Infolep Coordinator
www.leprosy-information.org
a.akerboom@infolep.org
 

 

 

Highlighted

 

Ending the neglect to attain the sustainable development goals: a strategic framework for integrated control and management of skin-related neglected tropical diseases

World Health Organization. 2022.
 

An Introductory Manual to Remote Service Provision for Supporting People with Disability and Leprosy
The Leprosy Mission Myanmar, NOREC. 2022.
 

Remote disability and leprosy services via basic communications technology
Theint ZM, Htun ZL, Swe KM, et al. Lepra. Leprosy Review. 2022; 93 (2) : 166-171.
 

Health and ethnic inequalities in Mozambique with special reference to leprosy
Casimiro IM, Machele J. UNU-WIDER. WIDER Working Paper. 2022.

 

 

Leprosy & COVID-19

 

Hansen's disease case detection in Brazil: a backlog of undiagnosed cases due to COVID-19 pandemic.
Deps P, Collin S, de Andrade V. Journal of the European Academy of Dermatology and Venereology : JEADV. 2022.
 

Comment on "Multibacillary leprosy unmasked by COVID-19 vaccination".
Hanumanthu V, Narang T, Dogra S. JAAD case reports. 2022.

 

 

New publications

Feel free to contact me to receive full-text versions if these cannot be found through the Infolep portal.

 

Leprosy stigma and its effect on the marriage experience of leprosy affected people and their descendants: the case of Addis-Tesfa Hiwot settlements in Ethiopia
Ayele H. Lepra. Leprosy Review. 2022; 93 (2) : 149-160.
 

Investigación del estigma y las comorbilidades del paciente con Lepra
Juan Jimenez C, Lopez Echevarria JR, Martínez Pérez A, et al. Universidad de Alcala. Revista de Investigación y Educación en Ciencias de la Salud (RIECS). 2022; 7 (1) : 41-51. 
 

Sociodiscursive representations about leprosy in educational campaigns: implications on stigma reduction
Arantes EO, Lana FCF. FapUNIFESP (SciELO). Revista Brasileira de Enfermagem. 2022; 
 

The quality of life of patients diagnosed with leprosy in a city in Piauí
Pereira de Souza IC, Guedes Alencar Correia V, Velôso HP, et al. Universidade Federal do Piaui. Rev Enferm UFPI. 2022.
 

Correlation between quality of life and the clinical results of patients with leprosy with drop foot after tendon transfer
Cohen J, Rodrigues N, Cabral E, et al. Acta ortopedica brasileira. 2022; 30 (3) : e244354. 
 

Social participation restriction among persons with leprosy discharged from a multidrug therapy clinic in northern Nigeria.
Dahiru T, Iliyasu Z, Aliyu M. Transactions of the Royal Society of Tropical Medicine and Hygiene. 2022.
 

Factors Influencing Leprosy-Affected People for Migration, Distant Registration and their Effect on Leprosy Services in Bangladesh
Hossain QZ, Hadi MA, Azad-uz-zaman Q, et al. Indian Journal of Leprosy. 2022.
 

Leprosy patients with deformities at post-elimination stage: The Bangladesh experience.
Mowla M, Angkur D, Hasan Z, et al. Skin health and disease. 2021; 1 (1) : e5.
 

National Health Survey reveals high percentage of signs and symptoms of leprosy in Brazil.
Penna G, Pontes M, Nobre M, et al. Ciencia & saude coletiva. 2022; 27 (6) : 2255-2258.
 

Território, doenças negligenciadas e ação de agentes comunitários e de combate a endemias
García GSM, Souza EAD, Araújo VMD, et al. Universidade de Sao Paulo, Agencia USP de Gestao da Informacao Academica (AGUIA). Revista de Saúde Pública. 2022.
 

Association of CD209 (DC-SIGN) rs735240 SNV with paucibacillary leprosy in the Brazilian population and its functional effects.
Germano G, Braga A, de Camargo R, et al. Memorias do Instituto Oswaldo Cruz. 2022.
 

The two extremes of Hansen's disease-Different manifestations of leprosy and their biological consequences in an Avar Age (late 7th century CE) osteoarchaeological series of the Duna-Tisza Interfluve (Kiskundorozsma-Daruhalom-dűlő II, Hungary).
Spekker O, Tihanyi B, Kis L, et al. PloS one. 2022; 17 (6) : e0265416.

 

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.
Putri A, de Sabbata K, Agusni R, et al. PLoS neglected tropical diseases. 2022; 16 (6) : e0010476.
 

Clinical profile of patients with pure neuritic leprosy: 20 years' experience at a tertiary referral centre from North India
Bhalla M, Poonia K, Jain S, et al. Lepra. Leprosy Review. 2022; 93 (2) : 131-137. 
 

Associated factors study into the belated screening for leprosy in Benin.
Gnimavo R, Sopoh G, Djossou P, et al. PLoS neglected tropical diseases. 2022; 16 (6) : e0010533. 
 

Beneficial Effect of Minocycline as Additional Treatment to Prednisone for Pustular Erythema Nodosum Leprosum.
Gunawan H, Faldian Y, Hindritiani R. International medical case reports journal. 2022.
 

The Type I Interferon Pathway Is Upregulated in the Cutaneous Lesions and Blood of Multibacillary Leprosy Patients With Erythema Nodosum Leprosum.
Rosa T, Mendes M, Linhares N, et al. Frontiers in medicine. 2022.
 

Safer and newer antimicrobial drugs for leprosy – time to test monthly ROM in an adequately powered randomised trial?
Lockwood DNJ, Penna GO, Lambert S, et al. Lepra. Leprosy Review. 2022; 93 (2) : 96-101. 
 

Ofloxacin resistance in multibacillary new leprosy cases from Purulia, West Bengal: A threat to effective secondary line treatment for rifampicin resistant leprosy cases.
Ahuja M, Singh I, Lavania M, et al. Journal of global antimicrobial resistance. 2022.
 

Evaluation of the integrity of the facial muscles in leprosy patients using surface electromyography: a cross-sectional study
de Oliveira MF, dos Santos DF, Peres LB, et al. Lepra. Leprosy Review. 2022; 93 (2) : 115-130. 
 

A review of nutrition in neuropathic pain of leprosy.
Klowak M, Boggild A. Therapeutic advances in infectious disease. 2022.
 

Are the clinical features of leprosy and American tegumentary leishmaniasis worse in patients with both diseases?
de Carvalho A, Luz J, Steinmann P, et al. Revista do Instituto de Medicina Tropical de Sao Paulo. 2022.
 

A study of histopathological spectrum of leprosy at tertiary care hospital
Patel PR, Patel K, Vyas J, et al. IP Innovative Publication Pvt Ltd. Indian Journal of Pathology and Oncology. 2022; 9 (1) : 16-20.
 

The Presence of Mycobacterium leprae in Wild Rodents.
de Lima M, Silvestre M, Santos E, et al. Microorganisms. 2022.
 

Effective amelioration of lucio phenomenon with adjuvant tofacitinib therapy in a patient with dual infection of M. leprae and M. lepromatosis : A case report from India.
Patel NH, Padhiyar JK, Patel KA, et al. Microbiology Society. 2022.

 

 

 

Events

 

Leprosy Research Initiative Spring Meeting 2022
7-8 April | Recordings
 

WHO Launch of the strategic framework for the integrated control and management of skin NTDs
8 June | Recording
 

COR-NTD Research Review: Mental Health and Stigma 
22 June | Recording
 

TLMI Webinar: How close are we to being able to diagnose leprosy in the field?
28 June | Recording

 

iCHORDS Knowledge Exchange café: Using Rapid Qualitative Assessments to Improve Mass Drug Administration
21 July | Online event
 

NNN Conference
13-15 Sep 2022
Kathmandu & Virtual
 

COR-NTD Annual Meeting 2022
4 - 5 Oct | Virtual
 

21st International Leprosy Congress
8-11 Nov 2022
Hyderabad & Virtual

 

 

Links

 

Info Hansen - A innovative hub for knowledge sharing about Hansen's Disease
 

ALLF - Official website of the Association des Léprologues de Langue Française
 

LML - Leprosy Mailing List - a free moderated email list that allows all persons interested in leprosy to share ideas, information, experiences and questions
 

InfoNTD - Information on cross-cutting issues in Neglected Tropical Diseases (NTDs)

 

ILEP newsletter archive

GPZL newsletter subscription

WHO Goodwill Ambassador's Leprosy Bulletin

Leprosy Review

Leprosy Review Repository (1928-2001)

Fontilles Revista de Leprología

Indian Journal of Leprosy

Hansenologia Internationalis

 

GDPR & the Infolep newsletter

 
New EU data protection regulations came into force on 25 May 2018. We have been reviewing our practices with regards to the GDPR, including our privacy statement and mailing list.

Infolep sends out monthly e-mails with an overview of recent publications on leprosy and related issues. The purpose of this activity is to keep subscribers up to date.

Infolep will only process the data we have (names, email addresses) for the purpose of sending you the newsletter. We take your security seriously and will never share your contact details with anyone else.

You can update your preferences or unsubscribe from this list at any time.

 

Send us an email

Send us an email

 

Visit our website

Visit our website

 

 

 

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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