February 2018
Each month, we share our progress, next steps, and profiles of the people involved in the Global Partnership for Zero Leprosy.
Steps forward: upcoming research agenda, country strategies and collaborations
Secretariat Director Courtenay Dusenbury reflects on positive steps in the last year

The formal report of the International Task Force on Disease Eradication (ITFDE) meeting on leprosy, also known as Hansen’s disease, outlined six important conclusions and recommendations. Published in WHO’s Weekly Epidemiological Report (11 January) the recommendations are a stark reminder of how much is still unknown about the disease, and how much more needs to be done to develop the research, global targets, anti-discrimination initiatives, funding and other tactics necessary for Zero Leprosy.

At the same time, as we reflect on the ITFDE recommendations today, the many positive steps forward by the leprosy community since last April are impressive and heartening. With an aligned research agenda nearing completion, and tools and strategies to work in partnership with national programmes, the community is actively seeking out opportunities to work together, and encouraging others to do the same.  

Less than a year after the ITFDE discussed its recommendations, the leprosy community, including the Global Partnership for Zero Leprosy’s 425+ members , have taken strong steps forward on each of them. WHO guidelines that include new interventions have been published. Initial work on global leprosy targets post-2020 is underway at WHO and a survey to obtain feedback on these garnered more than 180 responses and will be important to informing the selection of new targets and how they are measured. The research agenda, developed with the input of more than 140 individuals, is nearing completion, and will point out (among other priorities) the need to consider a diagnostic test for leprosy, and to collect, analyze and take action on better and more complete data . Read more .

Photo above: Courtenay in Bihar, India in June 2018.
Results for WHO 2030 targets survey coming next month
Thank you to all who responded to the 2030 leprosy targets survey. The survey gathered feedback on potential global targets grouped under the Triple Zero format . We are grateful to the 182 people who completed the survey.
We received hundreds of comments via the survey which are currently being compiled and reviewed. A summary of the survey results will be available in March.
The survey represents one step in the process of gathering input for WHO’s post-2020 global leprosy strategy. WHO’s Global Leprosy Programme will be seeking various inputs this year, including feedback from national leprosy programme managers. 
Aligning key research needs
Research Agenda Working Group nearing completion on recommendations

The Research Agenda Working Group is nearing completion on its recommendations. The recommendations are being developed into a manuscript for publication and individual sub-group reports will be available on www.zeroleprosy.org in the coming months.

The goal of the research agenda, through a broad and inclusive process, is to help align the leprosy community (and potential partners and donors) around key research needs and priorities for the future. Resource mobilization and support for the research agenda will be undertaken by a new Advocacy and Resource Mobilization Working Group as a key component of its efforts in 2019.  

The research agenda has benefited from many contributors.144 people joined the working group and many participated in sub-group teleconferences and email exchanges from September to October 2018... Read more.

Photo above: Inaugural research working group meeting held in Basel,Switzerland August 2018
Global community supporting countries through online toolkit, help desk and roadmaps
Update from the Operational Excellence working group

Managers from national leprosy programmes, along with representatives from ILEP organizations, are leading the efforts of the Operational Excellence working group.  The group includes close to 190 participants from all over the world . Organized into 11 sub-groups, the members have been participating in their first teleconferences and are beginning to identify and capture best practices for areas such as early detection of leprosy or reducing stigma. These practices will be documented and made accessible in an online Zero Leprosy toolkit , available later this year. The toolkit is intended to help countries reduce leprosy, end discrimination and promote inclusion.

This global community will also offer support to countries through an online help desk . Working closely with the World Health Organization, the working group will in the near future begin country reviews , and support countries develop medium-to-long-term roadmaps to zero leprosy . The group is coordinated by Christine Fenenga, Global Partnership for Zero Leprosy secretariat, and chaired by Bart Vander Plaetse, FAIRMED.

Photo above courtesy of The Leprosy Mission Trust India
Program profile: Maldives
Over the past several decades, great efforts have been made in controlling leprosy worldwide. However, leprosy remains a challenge in many countries, with South East Asia bearing the brunt. These countries are all determined to overcome leprosy and its complications. Every month we will be highlighting a country in the WHO South East Asia Region to show the steps they are taking towards a leprosy-free region. 

The beautiful island country of Maldives is featured this month. Maldives is making great progress towards ending leprosy, with only a small number of new cases per year. Read about the history of leprosy in Maldives, its many activities for treatment and surveillance, and its initiatives to support people with disabilities.
Letter to French President Emmanuel Macron, written by persons affected by leprosy

Political leaders continue to use leprosy as a negative metaphor, perpetuating stereotypes and reinforcing stigma about the disease. President Macron and a spokesperson have used the metaphor in several high-profile speeches over the past several months. An international group of organizations and individuals affected by leprosy recently wrote an open letter to President Macron, explaining that the metaphor has consequences beyond the political realm.

Read the letter to French President Macron, written by people who have experienced leprosy: English and French

Leprosy as a negative metaphor has also been used by other leaders in recent months . See the statement by UN Special Rapporteur Alice Cruz here .
Upcoming Events

ILEP Meetings, 18-20 Mar 2019, Greenville, South Carolina, U.S.
This year's ILEP meetings are hosted by the American Leprosy Missions.

Global Partnership for Zero Leprosy Leadership Meeting
21-22 Mar 2019, Greenville, South Carolina, U.S.
The Global Partnership for Zero Leprosy’s leadership team will convene following the ILEP meetings to discuss strategies and long-term milestones.

Leprosy Research Initiative (LRI) Spring Meeting
4-5 April 2019, Veenendaal, Netherlands
During this meeting, the progress and results of currently ongoing LRI funded research projects will be presented to the LRI Scientific Review Committee, the LRI Steering Committee and representatives from all funded research groups.

Global Training of National Leprosy Programme Managers
23-25 April 2019, Bangkok, Thailand
National Leprosy Programme Managers from priority leprosy endemic countries will come together in a global training meeting hosted by WHO’s Global Leprosy Programme.

20th International Leprosy Congress
10-13 Sep 2019, Manila, Philippines
The 20th International Leprosy Congress is an opportunity for scientists, researchers, health staff, partners and individuals affected by leprosy to interact, discuss and share experiences. Its theme is “Global Partnership in Addressing Current Challenges.” For registration and more details, visit the website.

Our online calendar lists global leprosy events and meetings. Are you hosting a meeting related to leprosy? Let us know by completing the  contact form.
Working together towards zero leprosy: join the partnership
Membership is open to all who are committed to zero leprosy and the partnership principles. See the current list of partnership members.

Global Partnership for Zero Leproy | www.zeroleprosy.org