October 27, 2016
This year’s annual ILEP October meetings were held in Bern, hosted by FAIRMED. From Tuesday 11 October to Friday 14 October, 100 members of the ILEP family and key colleagues met to discuss and debate a myriad of critical issues in the fight against leprosy.
The following meetings took place: ILEP Country Representatives workshop, meeting of the ILEP Technical Commission, meeting of the Panel of Women and Men affected by leprosy, meeting of Communication Network and meeting of the Members’ Assembly. In addition, we were joined by invited guests for the Thursday External ILEP Conference and to celebrate ILEP’s 50th anniversary.
1. Launch Triple Zero Campaign
A highlight of the meetings was the launch of the Triple Zero Campaign by ILEP’s CEO, Tanya Wood. The Triple Zero Campaign focuses on achieving the targets of:
Zero Disabilities: Preventing girls and boys from being disabled by leprosy and
Zero Discrimination: Abolishing discriminatory leprosy laws and policies.
2. Inaugural meeting of the ILEP Country Representatives
16 ILEP Country Representatives from 15 countries with input from the ITC and the WHO GLP debated many aspects of the role and responsibilities of the ILEP Country Representative. ILEP Members in ten countries agreed to develop Country Level Strategies and a task group will continue to develop the Terms of Reference for the role of ILEP Country Representative.
3. Meeting of the ITC
This was the 28th and final meeting of the current ITC chaired by Cairns Smith. Topics discussed included the TEG, London Declaration Scorecard, dapsone testing and drug resistance surveillance, LRI progress, updates on R2STOP and LPEP, innovation in stopping transmission, the WHO GLP Operational Manual, the need to improve communications between ILEP/ITC & ILEP Country Representatives, ITC and WHO, and ITC and Leprosy Review. The ITC also met with ILEP Country Representatives and discussed the implementation of the ILEP and WHO strategies at country level and training in leprosy.
4. Meeting of the Panel
The Panel deliberated and made a number of recommendations, including monitoring progress of the practice of the Principles and Guidelines of the UN Resolution on discriminatory laws, undertaking stigma research as experienced by people affected by leprosy within communities, and ensuring the inclusion of people affected and impacted by leprosy in the development of national policies.
5. Meeting of the Communication Network
The Communication Network discussed the implementation of the Triple Zero Campaign. They noted the need for Members to take part in the discussion forums and contribute to the new resources module (which is for sharing ILEP Members’ written resources rather than academic research). The Network recommended that a core group of communicators should be appointed to advise the ILEP Federation more closely.
6. ILEP External Conference “What will it take to reach a world free from leprosy?”
A number of distinguished guests and speakers were welcomed to the External Conference to present their views. Laura Gillini, Medical Officer GLP said “none of the many partners working on leprosy can achieve a leprosy free world independently, but by working together under the Global Leprosy Strategy, we can accelerate the goal. ” Ken Gibson from TLMI Ireland highlighted the tragedy that the Mission Millions represented. ITC Member, Christian Johnson advocated for enhanced commitment from local governments and policy-makers and Panel Member, Mathias Duck said that the full inclusion (participation and empowerment) of people affected by leprosy and people impacted by leprosy was required.
“if you want to go fast, go alone, but if you want to go far, go together” Christian Johnson.
Cairns Smith, ITC Chair, introduced a panel which presented a number of ways to Achieving Zero Transmission, recognising there was no single solution, but said “success would only come from many approaches applied together, with a lot of different techniques and aspects.”
Stewart Cole, Global Health Institute of Lausanne (and President of the Medical Commission for FRF) reported on the different types of diagnostics being developed for leprosy including fluorescent microscopy, lateral flow assays, VCP-LFA and molecular biology.
Deanna Hagge, TLMI, Hospital Research Laboratories, Kathmandu, described her research into the connections between worm infestation in humans and the related susceptibility to leprosy. She is collecting evidence to make clinical recommendations on the basis that controlling worms may make populations more resistant. Her research will shortly be published.
Vivian Velema Andyka, NLR, presented the LPEP project (leprosy post exposure prophylaxis) in its third year of implementation, which was designed to protect high risk populations. Currently, this is the only project being implemented which focuses on the prevention of leprosy.
Bill Simmons, American Leprosy Missions said “the best way to provide quality patient care is with an integrated healthcare system and that mapping of data could facilitate the integration and distribution of resources.” He added “mapping is useful to understand how many people are at risk. The AIM initiative brings everyone’s interests together under a collaborative framework and facilitates access to health services.”
Paul Saunderson, Medical Director, ALM said “a new vaccine has been developed which has reached the IND filing stage. A safety trial in humans is the next step and then trials in endemic countries. It has the potential to help prevent leprosy in contacts of known cases, but we need the evidence from clinical trials before it can be widely used.”
7. ILEP Internal Conference
Although the Triple Zero Campaign was a key topic, another important subject for ongoing discussion and development is the ILEP Membership Strategy in which ILEP proposes to open membership up to non-NGO affiliated members for greater voice and visibility and the possible development of an ILEP National platform.
8. ILEP Policy on the use of language and photography
Based on extensive consultation, this new policy was approved by the Members’ Assembly. Read more. Its purpose is to provide a framework or guidelines for the use of language, photography and imaging used throughout the ILEP Federation in all online/digital, written, print, or oral communications.
9. Knowledge Platform
The Knowledge Platform is now live on the ILEP Members’ side of the ILEP website. The main component is the searchable WWWmap (Who is doing What and Where). It is backed by a database of over 700 projects and is searchable by country, Member, strategic goal and keyword.
10. ILEP celebrates its 50th anniversary
The Siechenhaus leprosy sanctuary, Burgdorf was the auspicious location for commemorating this ILEP milestone. Participants enjoyed a traditional Swiss meal accompanied by music and speeches made by ILEP President, Jan van Berkel, Panel member, Rachna Kumari, FAIRMED President, Rolf Lehmann, FAIRMED Director, René Stäheli, with messages of congratulation from Yohei Sasakawa, The Nippon Foundation and Dr Margaret Chan, Director General of WHO. Toasts were raised to the original founders.
11. Results of the elections (Members’ Assembly, Friday 14 October 2016) are as follows:
Panel of women and men affected by leprosy: Rachna Kumari from India, Mathias Duck from Paraguay, Kofi Nyarko from Ghana, Amar Tamilsina from Nepal and Paula Soares Brandão from Brazil were elected to the Panel for a term of four years.
ILEP Technical Commission Paul Saunderson (Chair), Wim van Brakel, Michael Chen, Diana Lockwood, Bart Vander Plaetse, Stewart Cole, Bassey Ebenso and Tina Mendis were elected to the ITC for a term of four years.
New ITC members:
Executive Board: Jan van Berkel (President), Alex Jaucot (DFB), Bill Simmons (ALM), Brent Morgan (TLMI) and Burkard Kömm (DAHW).
Read more here