Abstract
Leprosy Mailing List (LML) is an email-based moderated international discussion forum to share information, ask for opinions and advice, and discuss issues related to leprosy and its control. It brings together around 600 persons from different parts of the world, who have an interest in leprosy. It is most commonly used for discussing clinical issues. Over the decades, with decrease in its prevalence, leprosy is seen as a niche area. There are many countries with limited expertise in diagnosis and/or treatment of leprosy and its complications, who continue to have small number of new cases. LML serves as a valuable forum to provide advice and support in such a situation.
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1 Introduction
The Leprosy Mailing List (LML) began in 2001 as an email-based moderated discussion forum circulated among a few friends who had experience of working in leprosy control programs. Gradually, it expanded among persons with an interest in leprosy from all over the world. It is an independent, free forum run on a voluntary basis by small editorial team—P. Schreuder (moderator), S. Noto (founder), B. Naafs, and S. Deepak.
The LML is open to everyone who has an interest in leprosy. To join the list, individuals should send an email to the moderator (editorlml@gmail.com).
The list has around 600 subscribers, among whom there are persons affected with leprosy as well as different health personnel including professionals with long experience of working in leprosy programs. The subscribers represent a wide variety of backgrounds including leprosy control, research, public health, laboratory, dermatology, tuberculosis, ophthalmology, neurology, infectious diseases, non-governmental organizations, and scientific journals.
2 History
During the initial years, the LML received support from two Italian academic institutions—Centre for Training and Research in Public Health in Caltanissetta and San Martino University hospital in Genoa, while its archives were hosted by the Italian leprosy relief organization (AIFO).
Since 2013 the management of the list is completely on a voluntary basis. Its recent archives are accessible to public through a Google group archive (https://groups.google.com/g/leprosymailinglist) and through a blog (http://leprosymailinglist.blogspot.com/).
3 Norms and Functioning
The LML is seen as a safe space for sharing new information, raising doubts, and debating ideas, including controversial issues, in a mutually respectful manner. It does not have a formal peer-review process for publishing contributions from members; however, individuals can share their views through articles explaining their arguments along with data and references.
Members can send contributions such as papers, letters, comments, and reports to the moderator, who edits them in a common format, and if needed, asks for clarifications from the authors, before circulating them in the list to all the members. All contributions to the LML are accepted as far as they are relevant to leprosy. When in doubt about a contribution, it is discussed jointly by the editorial team for taking a decision.
4 Issues Discussed in LML
The list brings together persons working in the field who can share doubts about cases under their care and ask for opinions from more experienced persons. Thus, clinical issues are the most popular. It is also a space for sharing information regarding new publications such as the WHO guidelines. Occasionally, researchers use the list to reach out to persons they would like to involve in their surveys or to identify specific field programs.
A review of messages shared on LML during the last 12 months shows that a total of 190 messages were shared in 2020. The most discussed issues on the list included strengthening the evidence-based practices in leprosy control, the impact of coronavirus (Covid-19) epidemic on leprosy services and drug supply, the duration of treatment of lepromatous leprosy, and the surveillance of development of drug resistance in leprosy.
5 Considerations About Role of LML
Over the past three decades, the prevalence of leprosy has reduced significantly, while the yearly incidence continues to be relatively stable. Today, it is seen as a niche area, and many specialized leprosy journals have stopped publishing. With integrated leprosy programs in the countries, professionals with wide experience in the disease are fewer, and specific expertise about the impact of advanced disease and its complications may not be available in many countries. Though only a few countries report significant numbers of new cases per year, the number of countries with lesser incidence continues to be large. According to the epidemiological report of the World Health Organization [1], in 2019 16 countries reported more than one thousand new cases, while another 99 countries reported lesser number of cases. In this situation, LML provides a valuable forum for discussions and for sharing of information and expertise.
In an international consultation on defining the global leprosy strategy for the period 2021–2030, held in October 2020, the Global Leprosy Programme of the World Health Organization identified different challenges facing leprosy control. These included limited engagement of the stakeholders and dwindling leprosy expertise across countries [2]. This again confirms the importance of the role played by LML.
LML is an open forum; one is welcome to put his/her considered opinion, preferably backed up by references, even when this opinion is not shared by “official” organizations and governments.
References
World Health Organisation. Weekly Epidemiological Record, No 36, vol. 95. Geneva, Switzerland: World Health Organisation; 2020. p. 417–40.
World Health Organization. Global Consultation of National Leprosy Programme managers, partners and affected persons on Global Leprosy Strategy 2021–2030: Report of the Virtual Meeting 26–30 October 2020. New Delhi, India: World Health Organization, Regional Office for South-East Asia; 2020.
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Schreuder, P.A.M., Deepak, S. (2022). The Leprosy Mailing List. In: Nunzi, E., Massone, C., Portaels, F. (eds) Leprosy and Buruli Ulcer. Springer, Cham. https://doi.org/10.1007/978-3-030-89704-8_38
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