effect:hope welcomes its new CEO!

Earlier this month, effect:hope welcomed Kim Evans as its new CEO.

A visionary leader and strategist, Evans received her law degree from Western University in London, Ontario, Canada and practised for 18 years. She then worked for 16 years at Inter-Varsity Christian Fellowship of Canada, an organisation focused on inspiring students and youth in their faith. In her role as Senior VP of Advancement and Strategic Operations, she galvanised her team around a mission and increased support for the cause. Evans aims to make a strong, positive impact at effect:hope and generate awareness and funds for people affected by leprosy and other neglected tropical diseases (NTDs).

“Experience has taught me that people are generous and have an innate desire to help people who suffer,” says Evans. “There is so much need among the people we serve, but effect:hope is alleviating their physical, emotional and social challenges through our faithful donors, partners and programmes.”

Since 1892, effect:hope has been working to reduce stigma and provide ongoing care for people affected by diseases such as leprosy with the goal of perhaps one day, seeing the diseases eradicated forever. Prior to Evans’ arrival, the Markham, Ontario-based Christian international development organisation was led by Peter Derrick, who retired at the end of August 2019.

“I’m honoured to work alongside a team and partner organisations that are passionate about being agents of hope – dedicated to eliminating NTDs, empowering people in their communities, and effecting lasting, positive change for the future,” says Evans. “I’m also intrigued by the innovative research taking place that takes us one step closer to solving the mystery of leprosy transmission.”

In the next few months, Evans will be busy meeting with donors, visiting the field, and attending partnership conventions. In between travels, and having only recently moved to Toronto, she looks forward to settling into a beloved and truly Canadian routine of hockey and Tim Hortons coffee!

Kim Evans would love to get to know the ILEP community. Feel free to introduce yourself and email her at kevans@effecthope.org, or if you are in the Toronto area on October 10, please attend an evening event where she will be officially commissioned as effect:hope’s new leader. RSVP by emailing bshields@effecthope.org by October 4.

New ILEP Board includes Maryse Legault

We’re delighted to announce that Maryse Legault has been elected to the ILEP Executive Board.

Maryse is director of Secour aux Lepreux/Leprosy Relief in Canada, where she first joined in 1981. She has a graduate degree in genetics and an MBA in nonprofit management, and extensive experience in both science and administration.

Maryse replaces Burkard Kömm. Brent Morgan (TLMI) was re-elected for a third 2-year term and takes over from Burkard as Treasurer. The other Executive Board members are Jan van Berkel (NLR), Alex Jaucot (DFB) and Bill Simmons (ALM).

WHO Global Leprosy Update

The 2018 Global Leprosy Update was published in the Weekly Epidemiological Review on 30 August. This report is WHO’s snapshot of the global leprosy situation at the end of 2018. This year’s report is longer and more thorough than the previous one, with a wealth of detailed country information. Read the full report here or read Dr Paul Saunderson’s, chair of the ILEP Technical Commission, brief commentary below.

Commentary on the Global Leprosy Update, 2018, published by WHO on 30 August 2019

By Dr Paul Saunderson

There are two very welcome and important changes in the current Global Leprosy update from WHO. Firstly, it includes for the first time an analysis of the new leprosy case detection rate in children (or, to be more precise, the age-specific rate in children), which provides a clearer picture of the trend towards reduced transmission than any other indicator that is easily available. Secondly, the report is much longer than previous reports. At 23 pages of the Weekly Epidemiological Record, and includes much additional information, analysis and commentary. It also includes country level data which had to be presented in a supplementary Table last year.

In the past, it has been routine to talk about the percentage of all new cases that were under 15 years of age; usually this was under 10%, sometimes as low as 3%, but in some of the highly endemic islands, as high as 30%. This was a reasonable indicator when the number of cases was high, but as the total number of cases (the denominator in the equation) gets lower, the result is less meaningful. For example, if there are only 10 cases reported, one child is already 10% of the total. A larger and more stable denominator is needed, and the total number of children in the population being considered seems the most appropriate: the number of leprosy cases in children can then be expressed per 100,000 children (or per million children), giving a much more stable figure which will show trends over time and allow comparisons between different areas. Another advantage of this indicator is that we already have the data for at least the last 30 years on which to base the calculations.

Figure 1 of this year’s report (on page 397 of WER, 2019: 94, 389-412) shows trends in the new leprosy case detection rate among children, by WHO Region, 2014-18. There is a general downward trend, with differences between regions. Although population size is growing, the downward trend can be confirmed by looking at the actual number of new cases reported in children (for example, 22,450 in 2007; 18,719 in 2014; and 16,013 reported in 2018). Global indicators may be distorted by the inclusion of large populations with very few cases (cf. global prevalence figures around the year 2000), and this effect is seen to a lesser extent in the regional figures used in Figure 1.  At the other extreme, looking at very small areas with low populations is also distorting. In general, the new case rate in children is ideal for looking at trends in country-level data, and it is very good to see that the “data are being analysed for all countries for further discussion of use of this indicator in understanding recent transmission of infection.” (Pages 397-8)

With new recommendations from WHO last year on the prevention of leprosy, it is important to find ways to monitor any effects these may have, and the rate of new cases in children may be very useful in this respect. The new case rate in adults is likely to decline slowly in parallel, but the graph of that decline will have a long tail, as the cases with a long incubation time appear over several decades in the middle-aged and elderly populations (cf. leprosy elimination in Norway, between 1860 and 1920: Irgens LM. Int J Lepr 1985: 53, 610-617).

Progress towards targets relating to disability and discrimination remains steady, but trends will only be apparent over several years. Relatively new columns in the database include the number of child cases with Grade 2 disability, the number of foreign-born cases, and the numbers of relapses and retreatment cases. All of these indicators show an increase from the 2017 data, but this is most likely due to more complete reporting: trends will only become clear when more datapoints are published.

In its Editorial note (pages 399-400), WHO mentions a possible new indicator that could be reported, namely the coverage of contacts with chemoprophylaxis. On the principle of ‘what gets measured, gets done,’ ILEP should encourage WHO to ask countries to report this information, for inclusion in future reports. If space is a problem, now may be a good time to ditch the prevalence figures once and for all. While the first few years may not give accurate or complete information, this would gradually improve. Promoting chemoprophylaxis in contacts helps to promote contact examination, which is the most cost-effective method of improving new case detection, with the subsequent benefit of reduced Grade 2 disability in new cases. Ideally, countries could report the number of contacts (or people in any other defined target group) examined, and the number given chemoprophylaxis; the first number should always be higher than the second, and will allow countries to report active case-finding activities, even if the uptake of chemoprophylaxis proceeds more slowly.

The first Global Forum of People’s Organizations on Hansen’s Disease

At the first Global Forum of People’s Organizations on Hansen’s Disease, which took place from 7-10 September 2019 in Manila, leprosy affected participants had the chance to exchange opinions, ideas and experiences along with strategies on entrepreneurship models to attain sustainability.

Organised by the Sasakawa Health Foundation and the Nippon Foundation, the forum endeavoured to bring together representatives from organisations of persons affected by Hansen’s disease with major stakeholders as observers before the 20th International Leprosy Congress. About 60 members of people’s organisations from 23 different countries participated along with more than 20 stakeholders from various backgrounds.

The purpose of the event was to provide training to build organisational sustainability and capacity of People’s Organizations, and to promote networking among participants. Takahiro Nanri, executive director of SHF, said to IPS reporter Stella Paul that the free flow of ideas and experience sharing among the participants would help to lead the future course of action to eliminate leprosy.

One of the main outcomes of the assembly was a demand to adopt a higher level of respect and make leprosy affected people central to any policy decisions being made.

Recommendations included that those affected by the disease should have a more inclusive role in the global campaign against leprosy. The recommendations made by the participants of the Forum were declared to global academics, scientists, researchers, health staff and partners during the opening session of the ILC and can be found here.

Country Coordination Meetings

Two ILEP Coordination meetings took place in Manila on 9 September. The countries discussed were Bangladesh and Niger.

The Bangladesh meeting resulted in the ILEP Members identifying several areas for possible collaboration in the future. It was agreed that an ILEP Member meeting will take place within the next month to revisit the ideas and recommendations that resulted from this meeting. These recommendations included the ILEP Members gathering to decide on the key inputs / priorities for the next National Leprosy Programme (NLP) strategy and to present these as a collective ILEP position to the NLP, supporting the expansion of the DHIS2 (data collection system), developing a reaction monitoring system, increasing shared active case finding campaigns, exploring joint initiatives and operational research that could lead to shared learning and advocacy points, working with the Leprosy and TB Coordination Committee to influence government budget allocations, and exploring the potential to secure funding to ensure that leprosy identification and treatment is done by the local government in the temporary Rohingya camps.

The Niger meeting resulted in several recommendations which included ILEP Members having an annual coordination meeting to share information, avoid overlaps and share resources, integrating the different strategic plans (Fondation Raoul Follereau supports the national strategic plan while The Leprosy Mission International has its own strategic plan) with a focus on active screening, improving the quality of data and its use, developing an e-learning module to improve the knowledge / training of practitioners and nurses on neglected tropical diseases, collaborating to abolish the existing discriminatory law which excludes children affected by leprosy from education.

GPZL update – September 2019

GPZL has launched the Zero Leprosy Toolkit in September at ILC, and is in the process of updating its Action Framework.

The GPZL Leadership Team had a full day meeting on 9 September in Manila before the International Leprosy Congress. The major agenda item was a thorough review of the GPZL Action Framework, which describes the long-range strategy of GPZL. This needed revising, partly because of the achievements to date, partly because GPZL is no longer in its ‘early formation’ period, and partly to reflect the 2030 targets for leprosy in the WHO NTD Roadmap. Work is continuing on this, and it is likely to be followed by a more detailed strategy document.

GPZL also launched the Zero Leprosy Toolkit, a set of field-tested best practices designed to support countries in their work towards ending leprosy and its associated disabilities and stigma. This is one of the outcomes of many months of work from the Operational Excellence Working Group. GPZL’s September newsletter explains: “Some of these best practices are scientific evidence-based, while others are practice-based because of their valuable contribution they’ve made to programmes. The tools were collected and reviewed under leadership of the national leprosy programme managers and partners for their relevance for the larger leprosy community.” We recommend that all ILEP Members and implementing partners be familiar with this Toolkit.

Members’ Assembly Open Session

On September 10 the ILEP Members’ Assembly held a morning session that was open to all.

The session included updates from The Global Partnership for Zero Leprosy, WHO Global Leprosy Programme, Alice Cruz – the UN Special Rapporteur on the Rights of Persons Affected by Leprosy, Infolep, and e-health technologies.

Short presentations were given by the ILEP Members on their experiences in using or developing e-health technologies for new digital activities such as collecting and holding patient information, mapping, telemedicine or other programme-level information systems.

These presentations served as a taster for the ILEP conference, which will take place in March 2020, with a focus on new technologies and leprosy expertise.

The 20th International Leprosy Congress

More than 1,000 delegates from 55 countries met in Manila to share research and experience on all facets of leprosy.

The International Leprosy Congress is a once-in-three-years ‘snapshot’ of the leprosy world. It was impressive to see people who had attended six, seven or even more Congresses over the years. But equally impressive, we saw large numbers of scientists and practitioners who are relatively new to the leprosy field, including 12% of delegates under 30 years of age. The overall theme was “Global partnership in addressing current challenges”. Many speakers referred to the Global Partnership for Zero Leprosy, which was formed as a direct outcome of the 2016 Congress, and more generally to the need to work together if we are to achieve the goal of zero leprosy.

The organisers prepared a 7-minute highlights video which can be viewed here. Compared with the 2016 Congress, there was an increase in the participation of persons affected by leprosy – boosted by the Global Forum which was held just before the Congress – and in the number of sessions on human rights, participation and psycho-social aspects of leprosy. The rise in importance of post-exposure prophylaxis was also evident in the number of sessions devoted to PEP and contact screening.

NNN Conference 2019 in Liverpool

A successful NTDs NGO Network (NNN) Conference saw the inaugural NTD Innovation Prize, an initiative of American Leprosy Missions.

Through the support of six ILEP Members, ILEP was one of the platinum sponsors of this Conference. Given that the International Leprosy Congress was just a few days earlier, it was pleasing to see plenty of ILEP connected people in Liverpool. Each attendee will have his or her highlights. For ILEP’s CEO these included:

• A moving, personal account at the opening plenary by Rajni Kant Singh, who has experienced lymphatic filariasis and now works for Lepra in India.
• Participation by Dr Mwele Malecela, head of WHO NTDs department, throughout the Conference, including the opening plenary when she emphasised partnership.
• An instructive half day on leprosy led by Erwin Cooreman (team leader, WHO Global Leprosy Programme) and Christine Fenenga from GPZL.
• A well-attended session on participation by persons affected by NTDs, co-led by Mathias Duck (ILEP Advisory Panel), Suresh Dhondge and John Sammadar of The Leprosy Mission.
• The inaugural NTD Innovation Prize, a cash award of $25,000. This was an initiative of American Leprosy Missions. You can read here about the winners and other finalists.

In the closing plenary, one of the past chairpersons reminded the Conference how leprosy had “infiltrated” the NNN back in 2009. We now have a major presence there.

A new informal network of institutional fundraisers in Nepal

ILEP institutional fundraisers in Nepal have decided to work together and form an informal network. This network will help the international funders to overcome the possible perception of lack of accountability and the difficulty they may face in establishing credible references when dealing with outside funding agencies.

The network will be fundraising and implementing programmes or projects related to leprosy, other NTDs and disability throughout the country as part of their institutional responsibility to generate resources and implement joint programmes. The coordinator of this network is Paritra Tamrakar of NLR.

This Institutional Fundraising Network has the following participants:

• International Nepal Fellowship;
• NLR Nepal;
• Nepal Leprosy Trust;
• The Leprosy Mission Nepal (TLMN);
• FAIRMED; and
• Damien Foundation Nepal.

The network has connected with Christine Fenenga, the Operational Excellence Working Group Coordinator of the Global Partnership for Zero Leprosy, to discuss the opportunities and challenges for fundraising relating to the outcome of the GPZL Nepal Country Review.

This is a great example of ILEP Members inspiring the rest of us around country coordination!

CRPD Committee highlights leprosy

The CRPD Committee has highlighted leprosy in its concluding observations on India, and is showing a strong ongoing interest in human rights for persons affected by leprosy.

This month ILEP has made four written and oral submissions to the CRPD (Convention of the Rights of Persons with Disabilities) Committee. These are on the human rights situation facing persons affected by leprosy in Lao PDR, Mexico and Venezuela, and discriminatory laws in Singapore.

We are delighted to see frequent mention of leprosy in the CRPD Committee’s concluding observations on India. In particular, paragraph 12(b) calls on the Government of India to repeal all discriminatory laws and to be guided by the “UN Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members” to address the situation of persons affected by leprosy. These were two of our key points of advocacy with the Committee.

New report on rehabilitation for human rights and SDGs

Humanity & Inclusion and the Global Rehabilitation Alliance recently published the Report “Rehabilitation for the realisation of human rights and inclusive development,” which places rehabilitation and disability within the context of the Sustainable Development Goals (SDGs) and Universal Health Coverage (UHC).

The report highlights that rehabilitation plays a key role in enacting both the UN Convention on the Rights of Persons with Disabilities and the SDGs. Understanding the links between these instruments has the potential to support substantial progress towards the realisation of the SDGs, using disability-inclusion as a framework for action.

Fifty per cent of people with disabilities in many developing countries have unmet needs for rehabilitation, which constitutes a failure to uphold their human right to health and wellbeing.

ILEP Members will be most interested to read the conclusion as it provides sets of specific recommendations for different stakeholders (states, donors and civil society, including disabled people’s organisations), which have the potential to strengthen rehabilitation services and improve the health and wellbeing of millions around the world.

Systematic integration of rehabilitation into health systems, development of sustainable funding mechanisms aiming at UHC, and support to Community-Based Rehabilitation have been identified as crucial elements to make much-needed progress.

3rd Community Based Rehabilitation World Congress call for abstracts/proposals

The 3rd CBR/CBID World Congress will be taking place on 28-30 July 2020 in Entebbe, Uganda with the theme to Leave No One Behind – local to global multisectoral collaboration for persons with disabilities to realise their human rights in communities.

The Congress will act as a major global focus point for all stakeholders in CBR/CBID and Inclusive Development to share their voice, demonstrate best practices, document innovations, forge new directions including using digital technology and social media in social action, construct strategic alliances, and formulate innovative disability services. This Congress is the subsequent step to make the aspirations and commitments of global statements on CBR/CBID a reality. It is continuing to build on the progress made earlier in the CBR/CBID congresses focusing on shaping the future of disability services and inclusive development actions globally for individuals with different disabilities.

The Congress is also looking for particular participation from other marginalised groups such as women, ethnic minorities, members of the aging population and activist groups. They are also calling for abstracts / proposals for presentations and workshops on a wide range of topics, for example food justice, women’s rights, the role of carers, disaster risk reduction, people affected by neglected tropical diseases, as these relate to people with disabilities and their families. The hope is to have innovative and practical presentations – that can even be provocative with a focus on learning for all the participants. They encourage presentations from under-represented groups and presentations in unusual and innovative formats. Whatever the format, they expect all the presentations to be participative and engaging – creating dialogue with one another, not just talking at people!

With the expectation of about a thousand participants, the CBR Global Network is hoping to get abstracts/proposals particularly from people who are not academics but are practitioners with something interesting to share.

The submission of abstracts/proposals is due by 31 October 2019 and you can find more information here.