GPZL turns 2

This year’s World Leprosy Day marked the second anniversary of the founding of the Global Partnership for Zero Leprosy. In the past two years they’ve seen the growth of the partnership from an idea into a collaborative platform that unites groups working in leprosy and accelerates action towards zero leprosy.

They have made many strides over the past two years, including an aligned research agenda, the creation of the Zero Leprosy Toolkit, and the launch of two country missions in Nepal and Morocco. They expect to work with five more countries in 2020, where they will support National Leprosy Programmes and help countries set out on a path to zero leprosy.

They say thank you to all of their partners that have made the work of the last two years possible. They are looking ahead to a world without leprosy, confident that together we can get there.

Watch an anniversary message from GPZL Leadership Team Chair, Bill Simmons here.

Reposted with permission from GPZL – originally published in January 2020 here.

World Leprosy Day – 26 January 2020

This World Leprosy Day, observed on Sunday 26 January, focused on the need to end the stigma and discrimination associated with leprosy by protecting the human rights of people affected. Leprosy was highlighted across media and social platforms reaching a wide range of stakeholders and audiences around the world.

Supportive tweets came from many quarters, including people affected by leprosy, government health ministries, WHO, UN officials, celebrities, the NTD community, other health and development NGOs along with the Pope.

It was great to see a lot of positive coverage across social media platforms, as ILEP Members, partners and the broader leprosy community drew attention to this important, but often neglected, aspect of the disease. To see the social media toolkit, visit here.

GPZL implementation plan workshop

The Global Partnership for Zero Leprosy (GPZL) hosted a meeting on 13-14 January in Amsterdam to gather input from partner organisations on their work with endemic countries.

This was an important and inspiring event. GPZL was launched two years ago and has achieved most of its first-stage objectives. It is now time to move into the ongoing operational phase where one of the main tasks is to form National Partnerships for Zero Leprosy and work with them towards achievable zero leprosy objectives.

Eighteen persons from ILEP Member associations were among the 34 attendees. There was also a strong presence from Novartis as well as from national programmes, WHO, people’s organisations and the GPZL Secretariat. Working in small and large group discussion sessions, participants shared their core values and hopes for GPZL. The meeting’s main objectives were the following:

1. To develop criteria which GPZL can use to select which countries it will aim to work in during the coming years. This includes five countries in 2020 and at least 30 by 2030. GPZL is already being approached by more countries than it can work with in the short term, so criteria are needed to ensure a fair, equitable and representative selection process.
2. To create implementation plans for the preparation and implementation phases of Zero Leprosy partnerships in-country. This involved three steps:
   • Specifying what key actions are needed in each of these phases;
   • Identifying the main strengths and potential contributions of each of the partners; and
   • ‘Mapping’ the potential contributions to the key actions

More details of the workshop and a listing of ideas generated can be seen at here.

GPZL 2020 country support

The Global Partnership for Zero Leprosy (GPZL) is supporting high, medium and low leprosy-burden countries by bringing together partners in-country and international stakeholders to work on country-led customised strategies that address local needs and priorities to end leprosy.

GPZL spearheads this work in close collaboration with WHO’s Global Leprosy Programme, and offers support to national programmes through this unique country model approach. This model builds country capacity through country reviews, roadmaps, and resources and tools.

They work with countries to:

• Help take stock of their current activities and needs through country reviews;
• Create visioning roadmaps that lead towards zero leprosy; and
• Support country-led strategies through resource mobilisation, technical assistance and online tools.

The partnership is selecting priority countries for 2020 and is asking interested countries to submit Expressions of Interest through the website for consideration this year. Expressions of Interest for country support in 2020 are due 1 March 2020. 

If you work with a National Programme Manager who may be interested in GPZL’s country support for the leprosy programme, visit the Expression of Interest Form to learn more.

Evaluation of India’s Leprosy Eradication Programme

In November, a team chaired by Bill Simmons (American Leprosy Missions) undertook an independent evaluation of India’s National Leprosy Eradication Programme (NLEP). The findings were released on 28 January at a high-level meeting in Delhi involving representatives from the Ministry of Health, WHO, ILEP, Novartis and Sasakawa Health Foundation. ILEP India leaders met with Geoff Warne the previous day.

The strategic recommendations are in six categories:

• Sustained and stronger political commitment at state government level;
• A zero leprosy roadmap with different sets of strategies based on the endemicity of districts (a major departure from the way the programme currently operates);
• A set of improvements to programme management including — capacity development, consideration of joint programmes with other NTDs, and rethinking the balance between integration of leprosy services and maintaining elements of a disease-specific structure;
• A stronger focus on disability prevention and medical rehabilitation, particularly including recording of Grade-1 disability and monitoring patients with Grade-1 and Grade-2 disability for ten years after the completion of MDT;
• Better strategies for urban leprosy control; and
• A range of ways in which NLEP needs to work and coordinate more effectively with other government sectors, with communities, and with partners like ILEP.

Some of these recommendations, and the operational recommendations that accompany them, could be transformative. Likely next steps include stakeholder meetings to plan implementation. This will be a critical time for ILEP, enabling us to look afresh at what ILEP Members can contribute to the NLEP.

Bangladesh Leprosy Conference

The most high-profile leprosy event in Bangladesh for decades was held in December 2019, initiated by Sasakawa Health Foundation with the Ministry of Health. The 500 invitees included senior civil servants from various ministries, heads of health services from all the districts, personnel from WHO, NGOs and persons affected by leprosy.

The highlight was the presence of Prime Minister Sheikh Hasina Wazed, who chaired the inaugural session and gave the keynote speech. Having the PM attending a leprosy conference is a major achievement in Bangladesh. She talked about her personal interactions with persons affected by leprosy dating back 30 years. She announced that she is personally committed to Bangladesh reaching zero leprosy by 2030. In her speech she covered the need to stop neglecting leprosy, to promote inclusion, to expand early case detection, and to undertake research. Such is the PM’s authority in Bangladesh that our colleagues who were at the meeting have no doubt that a clear message got through: she expects action.

The following day there was a national meeting of persons affected by leprosy, organised by Sasakawa Health Foundation with the support of Lepra and TLM. The participants agreed on some preparatory steps towards formalising a nationwide network or organisation of persons affected by leprosy. The lack of a national ‘voice’ of persons affected by leprosy has been very evident and it is good to see this coming into existence.

As a result of the PM’s statements, there is expectation on the Ministry of Health and Family Welfare to plan how to achieve the goal of zero leprosy, and an opportunity for ILEP and GPZL to work closely with the Ministry towards this objective. The next steps include an official request to the Secretary of Health to organise a meeting to discuss the follow-up activities of the conference together with the key stakeholders including ILEP and GPZL. We are hoping that this may take place in the next two months.

TLM global advocacy campaign

In January Disabled Peoples’ International (DPI) and The Leprosy Mission (TLM) Global Fellowship members started an advocacy campaign to increase ownership and political commitment from governments of leprosy priority countries.

The campaign started with a meeting with the Special Rapporteur on Right to Food in Rome on 21 January followed by submission of their appeal in the form of an ‘Open Letter’ informing her why her mandate should have  special focus on persons affected by leprosy. The plan in the future is to also work with other Special Rapporteurs such as those focussed on health, older persons, adequate housing, drinking water and sanitation, cultural rights, extreme poverty, discrimination against women and girls, etc.

Though the team is already working closely with three Special Rapporteurs (leprosy, disability rights and violence against women) they are now targeting other Special Rapporteurs with mandates that are relevant to  people affected by leprosy and their families.

This advocacy strategy is similar to the one used by disability rights advocates and that is to mainstream the human rights of persons affected by leprosy across all relevant UN human rights mechanisms so that there is greater impact and holistic approach to promote and protect human rights of persons affected by leprosy. Mainstreaming leprosy and rights of persons affected by leprosy within the human rights discourse will help to further the conversation.

ILEP meetings March 2020

Together with The Leprosy Mission International, we are looking forward to welcoming all ILEP Members to Brentford for ILEP’s upcoming meetings, which will take place from 16 to 20 March 2020.

ILEP Conference on Digital Technologies and Leprosy Expertise

The ILEP Conference on Digital Technologies and Leprosy Expertise will take place on Monday 16 to Wednesday 18 March at the Holiday Inn Brentford Lock.

The conference has two interconnected purposes: 1) for ILEP Members to learn from one another’s experiences in the use of innovative digital technologies to improve programmes and services, 2) and to identify possible solutions for the chronic problem of loss of leprosy expertise. It is expected that the outcomes will benefit ILEP, GPZL and the leprosy world as a whole.

The first part of the conference will focus on sharing experiences regarding the application of digital technologies in mapping, diagnostics, patient management and health information systems. Participants will be able to compare the benefits of different approaches and gain awareness of potential new technologies being developed.

The second part of the conference will focus on better understanding the specific levels of leprosy knowledge or capacity required in order to achieve zero leprosy, developing a framework for innovative capacity building packages and understanding the potentials and constraints of using digital technologies to build leprosy knowledge/capacity.

ILEP Communications Network meeting

The 2020 ILEP Communications Network meeting will take place on Tuesday 17 and Wednesday 18 March at the TLMI office. The meeting will focus on three key elements of communications which were identified as being priorities by the network: press readiness, social media and metrics.

ILEP’s Advisory Panel, Technical Commission and Country coordination meetings

The ILEP Advisory Panel, Technical Commission and Country coordination meetings will take place on Thursday 19 March at TLMI office. The Panel and ITC are expected to attend the three-day conference before their meetings on Thursday. The country coordination meeting will focus on India and discuss how collaboration and information sharing can be improved at country level.

ILEP Members Assembly

The ILEP Members Assembly will take place on Friday 20 March at TLMI office. The morning session will include presentations from the WHO Global Leprosy Programme, Novartis and the Global Partnership for Zero Leprosy, as well as reports and recommendations from the Advisory Panel, ITC, Executive Board and Country Coordination workshop. The afternoon session is closed to CEOs and will include discussions on ILEP’s policy and advocacy positions, how to ensure diverse and robust leadership within ILEP, the process and timeline for the development of ILEP’s strategy 2021-2023 and ILEP’s annual and financial reports from 2019.

For more information, please contact Monty Mukhier.

Leprosy Research Initiative calls for proposals

The Leprosy Research Initiative (LRI) is pleased to announce a call for proposals for funding commencing in 2021. LRI funds research with a focus on leprosy – including research applications combining leprosy with other neglected tropical diseases (NTDs) or other diseases that share cross-cutting issues with leprosy.

Eligibility criteria:

• The main topic of the study must fall within one of the agreed priority areas.
• Research results must be directly applicable to leprosy services or to the wellbeing of persons affected by leprosy.
• Preference will be given to proposals from or in close collaboration with institutions or organisations in endemic countries.
• Project duration must not exceed four years (48 months).
• A typical project budget does not exceed €50,000 per year, but certain biomedical research projects may be eligible for supplemental funding.

In addition to the eligibility criteria, this year the LRI has a particular interest in studies which include specific strategies to improve the participation of persons affected in research and in studies which are in support of PEP implementation (across all priority areas).

Please note that salary costs of senior researchers in non-endemic countries will only be supported to a limited extent (normally to a maximum 0.1 fte).

Researchers interested to apply for funding by the LRI are invited to complete and submit a Letter of Intent (LoI), giving an outline of the intended research. The LoIs should be submitted using the LRI Grant Application portal – which can be accessed here.

LoIs should be submitted by 28 February 2020 at 23:59 (Amsterdam date and time) after which the application portal will be closed. LoIs will be screened by the LRI Steering Committee (SC). If the feedback by the SC is positive, the applicants will be invited to submit a full proposal before the next deadline (1 June 2020).

NTD Support Center calls for proposals

The Neglected Tropical Diseases Support Center (NTD-SC) has a number of requests for proposals, the most relevant to ILEP Members being those on research to address neglected tropical diseases (NTDs) and leprosy.

Research to Address Special Topics in Leprosy

Research supported by this call would help define existing barriers and opportunities in order to provide guidance as to how local health services can leverage existing platforms to ensure sustainability as they roll out PEP and other novel strategies. Additionally, developing community engagement strategies can help to reduce some of the social stigma that individuals face when seeking care for leprosy. Learn more here.

Research to Better Understand the Psychosocial Impact of NTDs

The outcomes of this request for proposals will strengthen the evidence base about the psychosocial impact of NTDs on individuals and their caregivers. The NTDs which will be considered for this call include: leprosy, lymphatic filariasis, onchocerciasis, schistosomiasis, trachoma, and visceral leishmaniasis. Learn more here.

Research to Identify Solutions to Address Barriers Facing Special Populations Seeking NTD Prevention & Treatment

The outcomes of this request for proposals will strengthen the evidence base by identifying the causes and piloting solutions that break through the barriers these special populations face in accessing NTD services. The NTDs which will be considered for this call include: leprosy, lymphatic filariasis, onchocerciasis, schistosomiasis, trachoma, and visceral leishmaniasis. Learn more here.

The deadline for the call for proposals is 7 February 2020 at midnight EST. All research activities, analysis, and final technical/financial reports for selected research projects must be concluded and submitted by 27 February 2021.