Fw: Ref.: (LML) Advocacy/lobbying, influence & justice

                                            Leprosy Mailing List –  August 23,  2025

 

Ref.:  (LML) Advocacy/lobbying, influence & justice

From: Joel Almeida, Mumbai, India

 

 

 

Dear Pieter and colleagues,

There have been several thought-provoking contributions to LML recently. Is scientific validity determined by the weight of influence or the weight of evidence? This talk by Dr. Kang, of the Gates Foundation, might be of interest. People tend to listen to the Gates Foundation because it has money. Dr. Kang is worth listening to because she has valuable experience. HD (H Disease) is mentioned. 

 

https://youtu.be/WZtL3Z6RPDI?si=FUaKzDhfkuQTyHmN&t=128

How can we achieve better and safer outcomes for the people we seek to serve in HD?

 

Polio has some lessons. The tragedy of acute flaccid paralysis attributable to mutant live polio vaccine holds lessons for well-intentioned interventions in HD control. The much safer and much more effective Injectable polio vaccine was highlighted by researchers in endemic countries long before the switch away from OPV was finally initiated. Regardless of intent, outcomes matter. The devastating impact of harmful interventions is not mitigated by advocacy/lobbying, committee resolutions or mathematical models. None of those suffices to restore eyes, hands or feet deformed by well-intentioned but harmful interventions. Advocacy/lobbying may seek to condone harmful elements by citing beneficial elements. Unfortunately, that is like condoning poison because it is mixed with food. The two are separable.

Fortunately, exemplary districts demonstrate growing success in rapidly and safely reducing the incidence rate of HD, post-COVID. Especially in countries that have a strong tradition of local expertise in science and public health. They tend to have constantly improving policies and implementation, grounded in evidence rather than advocacy/lobbying. Science is trustworthy because it does not claim infallibility. Instead, it steadily corrects errors. In the end outcomes speak more loudly than words. Conflicts of interest can lead to advocacy/lobbying that is against the best interests of people whose eyes, hands and feet are at risk. Scientific knowledge, with its self-correction, offers the most reliable shield for vulnerable people. 

 

As the centre of gravity shifts towards endemic countries, more room can be created for science, justice and humanity. Would it be a bad idea to boost the influence of those whose nerves, eyes, hands and feet are at risk?

 

With all sincerity,

Joel Almeida

___________________________________________________________________

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. August, 2025

 

 

Leprosy Mailing List –  August 23,  2025

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy. August, 2025

From: Upasana Regmi  & Lukas Maass, Amsterdam, the Netherlands

 

Dear colleagues, 

In this edition, we spotlight the Neglected Tropical Disease Inclusion Score Card (NISC) - a tool designed to support NGOs in fostering inclusion and ensuring the meaningful engagement of affected persons in their organisational decision-making processes.

We are also excited to welcome back Upasana Regmi, who has re-joined us as Support Officer for Infolep & InfoNTD. Upasana brings valuable experience from her previous roles as Monitoring, Evaluation and Communication Coordinator at NLR Nepal, Research Intern, and most recently as Support Officer with the International Office. She will focus on supporting the platforms' development and strengthening user engagement.

At the same time, we would like to share that Lukas Maass, our current Support Officer, will be leaving the platforms at the end of August to pursue a PhD starting in October. We thank him warmly for his contributions and wish him every success in his next chapter.

Finally, you will find the latest publications listed below. Please feel free to contact us if you would like access to full-text versions that are not available on Infolep, or if you would like our support with literature searches.

 

Warm wishes,
Upasana Regmi  & Lukas Maass

www.leprosy-information.org
info@infolep.org
 

 

 

Featured Research Spotlight

From words to action: the development of the Neglected Tropical Disease Inclusion Score Card (NISC)
van Wijk R, Baudoin SJM, Ejiogu B, et al. Infectious Diseases of Poverty. Springer Science and Business Media LLC. 2025; 14 (1) : 1-15. 

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Association between MBL2 gene polymorphism and protection against leprosy in a population of northeastern brazil: a case-control study
Nogueira KRC, de Almeida Freitas H, da Paz MNVT, et al. Scientific Reports. Springer Science and Business Media LLC. 2025; 15 (1) : 1-10. 

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Quantitative lateral flow strip assays as User-Friendly Tools To Detect Biomarker Profiles For Leprosy
van Hooij A, Tjon Kon Fat EM, Richardus R, et al. Scientific Reports. Springer Science and Business Media LLC. 2016; 6 (1) : 1-11. 

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Leprosy in Missouri, USA: Are Armadillos Carrying the Causative Agent Mycobacterium leprae?
Lynn W. Robbins , Jonathan A. Dyer , Gillian A. Warner , et al. Journal of Wildlife Diseases. Wildlife Disease Association (WDA). 2025.

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Pre-clinical evaluation of a low-cost tool for skin temperature measurements as a proxy to assess autonomic nerve function in leprosy neuropathy
Knulst AJ, van den Bogaert F, Kuipers A, et al. PLOS One. Public Library of Science (PLoS). 2025; 20 (7) : 15. 
 

 

 

 

New publications

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

 

Implementation fidelity in leprosy care and support for disability prevention and management in Rupandehi, Nepal: A qualitative study
Nepal S, Probandari A, Timilsina A, et al. PLOS One. Public Library of Science (PLoS). 2025; 20 (7) : 18. 

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Knowledge, Attitudes, and Behaviors of the Residents of Karangrejo Village In Semarang Towards Morbus Hansen
Riyanto P, Rahmawati Purwanto HN, Adiwijaya M, et al. American Journal of Open Research. Academia Open Publisher. 2025; 4 (7) : 1-7. 

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Pakistan on the Road to Zero Leprosy, an analysis of routine data for the period 1980–2022: a retrospective cohort study
Iqbal M, Fastenau A, Salam A, et al. The Lancet Global Health. Elsevier BV. 2025. 

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Sociocultural and structural determinants of healthcare-seeking of people affected by leprosy in Sierra Leone's Western area: a qualitative study
Asboeck A, Kallon LH, Schlumberger F, et al. Tropical Medicine and Health. BioMed Central Ltd. 2025.

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The potential role of artificial intelligence in the clinical management of Hansen's disease (leprosy)
Deps PD, Yotsu R, Furriel BCRS, et al. Frontiers in Medicine. Frontiers Media SA. 2024.

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ADAMTS4 is expressed in different cells and tissues in leprosy skin lesions: A potential biomarker and therapeutic target for leprosy and its reactional phenomena.
Soares C, Garrido I, Soares R, et al. Histology and histopathology. Sercrisma International S.L.. 2025.

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Effectiveness of Designing and Implementing Community-Based Intervention on Leprosy Healthcare Services in High-Burden Districts in Ethiopia
Marrye SS, Shakwane S. Universal Journal of Public Health. Horizon Research Publishing Co., Ltd.. 2025; 13 (4) : 896-909. 

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Integrative immune analysis in patients with leprosy reveals host factors associated with mycobacterial control
van Hooij A, van Meijgaarden KE, Khatun M, et al. eBioMedicine. Elsevier BV. 2025.

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Assessment of TB47 as a potential novel therapeutic agent: in vitro and in vivo efficacy against Mycobacterium leprae
Gabriel Henrique Fioroni Furlanhttps , Diego Augusto Souza Oliveira , Daniele Ferreira De Faria Bertoluci , et al. Antimicrobial Agents and Chemotherapy. American Society for Microbiology. 2025.

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A single-cell V(D)J sequencing dataset of peripheral blood cells in  multibacillary leprosy
Li Z, Jia J, Zhang Q, et al. Scientific Data. Springer Science and Business Media LLC. 2025.

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Enhanced yield of active case finding for leprosy in Uganda, using an integrated 'Community door to door Awareness raising, Screening, Testing, Treatment and Prevention' (CAST) campaign in Uganda
Turyahabwe S, Kengonzi R, Kawuma J, et al. Leprosy Review. Lepra. 2025; 96 (2) : 1-8. 

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Challenges in Implementation of National Leprosy Eradication Program: Cross-Sectional, Qualitative Study in Three High Endemic Districts of West Bengal, India
Ray S, Das N, Bandyopadhyay K, et al. Indian Journal of Dermatology. Ovid Technologies (Wolters Kluwer Health). 2025.

 

Disparities in leprosy relapse from 2001 to 2022 in Brazil
Barbosa-Lima R, Vivian GF, Gomes BGDN, et al. Journal of Health &amp; Biological Sciences. Instituto para o Desenvolvimento da Educacao. 2025; 13 (1) : 1-7.

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Knowledge and Skills of Leprosy Among Healthcare Workers and Its Associated Factors in Primary Healthcare
Zafirah TN, Ahmad Zaki R, Lim SH, et al. INQUIRY: The Journal of Health Care Organization, Provision, and Financing. SAGE Publications. 2025.

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Assessment of knowledge and attitude toward leprosy among undergraduate medical students in north Kerala
Navya VS, Rajiv SV, George M, et al. Journal of Skin and Sexually Transmitted Diseases. Scientific Scholar. 2025.

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Leprosy in blood donors
Oliveira Jorge EV, Gobbo AR, Costa ILV, et al. Tropical Medicine &amp; International Health. Wiley. 2025.

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Fatores de risco para ocorrência de dano neural e reação em pacientes diagnosticados com Hanseníase
Bandeira TF, Alexandrino B, Almeida KDS, et al. Caderno Pedagógico. Brazilian Journals. 2025; 22 (9) : 1-19. 

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Transforming Lives: Understanding the Quality of Life of Leprosy Patients in Northern India
A Fatima , S Chaudhary , RA Jamil , et al. Indian Journal of Leprosy. Hind Kusht Nivaran Sangh. 2025.

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Leprosy Caused by Mycobacterium lepromatosis
Romero-Navarrete M, Arenas R, Han XY, et al. American Journal of Clinical Pathology. Oxford University Press (OUP). 2022; 158 (6) : 678-686. 

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The Minha Casa Minha Vida social housing programme and leprosy in Brazil: an analysis of the 100 Million Brazilian Cohort (2010–2015)
Teixeira CSS, Pescarini JM, Sanchez MN, et al. BMC Public Health. Springer Science and Business Media LLC. 2025.

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Roadmap towards zero leprosy, Pakistan
Fastenau A, Murtaza A, Salam A, et al. Bulletin of the World Health Organization. WHO Press. 2025; 103 (8) : 507-514. 

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Aspectos sociodemográficos e clínicos, nutricionais, participação social e limitação de atividade e consciência de risco de pacientes com hanseníase
Borges de Figueiredo F, Fontes Loures L, Cardoso de Lima MF. DEMETRA: Alimentação, Nutrição &amp; Saúde. Universidade de Estado do Rio de Janeiro. 2025. 

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Análise da incompletude do preenchimento das notificações de hanseníase em Palmas, 2022 a 2023
Jhon Cleyton Barbosa Campos , Fabiana Pires Rodrigues de Almeida Lopes , Marli da Silva Pimentel . Revista Cereus. Revista Cereus. 2025.

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Políticas públicas de controle da Hanseníase no Brasil: uma análise comparativa antes e após a criação do SUS
Nunes KMT, Cruz CMD, Souza CDS, et al. Caderno Pedagógico. Brazilian Journals. 2025.

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Vista do Conceptions obout leprosy for riverside dwellers: evidence for nursing care / Concepções sobre a hanseníase por ribeirinhos: indícios para o cuidado de enfermagem
Caetano LCC, Santos BS, Palmeira IP, et al. Revista de Pesquisa Cuidado é Fundamental Online. Universidade Federal do Estado do Rio de Janeiro UNIRIO. 2025.

 

 

 

Case Reports

Atypical Histoid Leprosy With Virchowian Features: A Report of a Histologically Deceptive Case
Altamirano De La Cruz AG, Santoyo Reza CA, Lugo Rincón-Gallardo FJ, et al. Cureus. Springer Science and Business Media LLC. 2025.

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A Study on Leprosy Reactions in a Tertiary Hospital in Northeast India
Joydeep Roy , Arup Paul , Shromona Kar , et al. International Journal of Pharmacy Research & Technology. Saveetha Dental college and Hospitals, Department of Pharmacy. 2025; 15 (2) : 479-483. 

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Lucio phenomenon and antiphospholipid antibodies in leprosy mimicking rheumatologic disorders: a case report.
Hidayat R, Damanik J, Araminta A, et al. Reumatismo. 2025.

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Erythema Nodosum Leprosum in a Patient with Borderline Lepromatous Leprosy: A Case Report
Chiriboga G, Guo Q, Zuberi E, et al. Infectious Disease Reports. MDPI AG. 2025; 17 (4) : 83. 

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An Atypical Presentation of Erythematous Macules Revealing Paucibacillary Leprosy
Baraz S, Baba R, Amraoui M, et al. Clinical and Experimental Dermatology. Oxford University Press (OUP). 2025.

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A New Case of Leprosy with Atypical Morphotype on Slit Skin Smear- Unmasking a Hidden Invader
G Bashir , M Aman , AS Malik , et al. Indian Journal of Leprosy. Hind Kusht Nivaran Sangh. 2025.

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Non-leprosy related dapsone hypersensitivity syndrome: A case report and literature review
Zhu H, Jiang S, Song G. Medicine. Ovid Technologies (Wolters Kluwer Health). 2025.

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Ulcerated Lesion in Histoid Leprosy
Naveen Kumar Kansal , Sunil Kumar Gupta, MD , Prashant Durgapal , et al. Skin Med. Pulse Marketing & Communications, LLC. 2025.

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"Leprosy incognito": A case report of unusual presentation of topical steroid-modified leprosy
Nanda S, Sushantika S, Saini K, et al. Leprosy Review. Lepra. 2025.

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The 15-Year Shadow: Borderline Lepromatous Leprosy with Erythema Nodosum Leprosum Following Prolonged Treatment Default
Rendra Darmasatria , Tutty Ariani , Yosse Rizal , et al. Bioscientia Medicina : Journal of Biomedicine and Translational Research. Hanif Medisiana Publisher. 2025; 9 (10) : 9048-9063. 
 

 

 

Literature Reviews

The Role of Community Health Workers in the Control and Management of Leprosy: A Scoping Review
Srihartati E, Dewi A. National Journal of Community Medicine. Medsci Publications. 2025; 16 (08) : 831-845. 

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Community-Based Interventions for People Affected by Leprosy: A Narrative Review
Masala CW, Haroen H, Pramukti I. Journal of Health and Nutrition Research. CV. Media Publikasi Cendekia Indonesia. 2025; 4 (2) : 706-717. 
 

 

 

News & Events

 

 

Trinidad and Tobago Takes A Bold Step Toward the Elimination of Leprosy

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2nd International Conference on Tropical Dermatology 11th to 14th March, 2026

 

 

 

 

Links

 

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

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

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

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

 

ILEP newsletter archive

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GPZL newsletter subscription

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WHO Goodwill Ambassador's Leprosy Bulletin

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Leprosy Review

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Leprosy Review Repository (1928-2001)

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Fontilles Revista de Leprología

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Indian Journal of Leprosy

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Hansenologia Internationalis

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HARP -  Hansen's Disease Antimicrobial Resistance Profiles

 

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

 

Visit our website

 

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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) Reflections from the International Leprosy Congress 2025 🇮🇩

 

Leprosy Mailing List –  August 20,  2025

 

Ref.:  (LML) Reflections from the International Leprosy Congress 2025 🇮🇩

From: LRI, Amsterdam, the Netherlands

 

 

Dear Colleagues,

 

Reflections from the International Leprosy Congress 2025 🇮🇩

The 22nd International Leprosy Congress (ILC) brought together over 1,200 global participants in Indonesia from 7 to 9 July, united under the powerful theme: "Towards a World Free from Leprosy." The congress served as a pivotal moment for researchers, health professionals, advocates, policymakers, and persons affected by leprosy to reflect, share knowledge, and renew their commitment to ending the disease and its consequences.

A unifying message echoed across plenaries, parallel sessions, and informal conversations: the knowledge and tools to eliminate leprosy already exist. What is needed now is sustained political will, inclusive collaboration, and long-term investment. This call was underscored by a strong national commitment from Indonesia's Minister of Health, exemplifying leadership at the highest levels.

Equally central to the congress was the inclusion of persons affected by leprosy. Their lived experiences and perspectives were a powerful reminder that progress must center on equity, dignity, and the elimination of discriminatory laws and practices. These voices not only grounded the discussions but also provided an urgent call to action.

LRI was proud to see numerous grantees present their work through oral sessions, e-posters, and panel discussions. The activity and engagement at the LRI booth reflected growing interest in our mission, from both long-standing partners and new researchers eager to contribute to the field. We were especially encouraged by the passion of early-career researchers exploring innovative ways to address persistent challenges in leprosy research and control.

As the congress concluded, it was announced that the 23rd International Leprosy Congress will be hosted in Brazil; another highly endemic country.

At LRI, we remain committed to supporting high-quality research, nurturing the capacity of future researchers, and working alongside the global community to realise a world free from leprosy; a world that is just, inclusive, and grounded in evidence.ro

 

 

to

 Best regards,

 

 LRI

__________________RIly united under the powerful theme: "Towards a World Fr

 

ee from Leprosy." The congress served as a pivotal moment for researchers, health

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: (LML) Monofilament Handgrip Set and Holder

Leprosy Mailing List –  August 15,  2025

 

Ref.:  (LML) Monofilament Handgrip Set and Holder

From: Robert Jerskey, Carlsbad, USA

 

 

 

Dear Pieter and colleagues,

 

I would like to share very good news regarding "loose graded nylon monofilaments", for those based in low resource contexts where they are not easily available or too expensive:

 

A fine innovative design of a hand held holder for monofilaments, via a link below that includes description, fabrication, and more.

A biomedical engineer who has spent extended time in Pokhara, Nepal, Arjan Knust, has developed and fabricated a Monofilament Handgrip Set and Holder, using a 3D Printer.  I had the pleasure of meeting him at the ILC Bali.  Conversation included a demonstration of the handgrips with calibrated, mounted monofilaments.  

I have found it to be very well designed, the construction is robust, and the handle very user-friendly.  It also includes a neat little user-friendly  "button" that when activated, glides and then secures, for both unfolding and folding away, the head holding the mounted MF so as to be securely protected. 

 
The sturdy handgrip ensures that the mounted MF and the handle are perpendicular 90 degrees, for use.

 

Mr Arjan generously extends free online open-access to the design of the holder for those who conducts or wishes to conduct sensory testing with the monofilaments would have the resource reproduce it via an available 3D printer.

 

Here is a concise profile of Mr Arjan, from "info" at this website.

 

"Arjan is working as a volunteer biomedical engineer for an NGO hospital in Nepal and is involved in research at the Delft University of Technology. His key interest is research on the development and maintenance of medical devices for limited-resource settings. He holds a Ph.D. and MSc in the field of biomedical engineering at the Delft University of Technology."

 

Arjan Knulst's website:

 

Monofilament handgrip set and holder by Arjan Knulst | Download free STL model | Printables.com

 

With friendly greetings to all,

Robert Jerskey

robjerskey@yahoo.com
+1-760-994-8935 Whatsapp

 

________________________________________________________________________________

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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