The field of leprosy work is continually changing. In some areas, the number of new cases has decreased to the extent that new approaches are needed to maintain clinical skills among leprosy workers, or to find new cases. The strong realization that we will not achieve a world without leprosy for a long time, unless we switch to active case detection methods and to measures of preventing leprosy, is also new. The positive experiences with the introduction of preventive treatment for leprosy among contacts using a single dose of the antibiotic called rifampicin have encouraged us to promote the scaling up of this new method to national levels in the countries involved.
A 2016 milestone was the launch of the WHO Global Leprosy Strategy 2016-2020. As an active member of ILEP, NLR contributed to the development of this Strategy.
This contains many new elements, especially a new emphasis on reducing leprosy-related stigma and discrimination to promote inclusion of all affected people and their families. To cope effectively with all the changes and make use of the new opportunities, we need continuous innovation. In part this is achieved by implementing pilot studies and action research during our ongoing work. However, scientific research is also a vital source of innovation in global leprosy work. This report contains examples of research projects that led to innovation and improved implementation of leprosy services in the field.
The Leprosy Research Initiative (LRI) is an important facilitator of leprosy research through funding, advice, mentoring, and, more recently training in research methods.
Infolep and InfoNTD are two information platforms for leprosy and cross-NTD issues respectively, that play an important role in sharing and disseminating innovations and research findings.
In 2016, NLR decided to refocus its strategic priorities regarding innovation and program support on 4 Key Priority Programs (KPPs). These will be developed as multi-country programs addressing important needs, gaps and challenges on the road to zero transmission, zero new disabilities due to leprosy, self-management of existing disabilities, and zero discrimination with full inclusion of people affected by leprosy in society.
Leprosy can only be eliminated if we can prevent people from getting leprosy and if we can stop the transmission of the leprosy bacilli. The first KPP involves a focus on facilitating the scale-up of the existing preventive treatment with single-dose rifampicin and on developing additional and improved strategies and interventions that will help achieve the global and national elimination targets. In the autumn of 2016, NLR submitted a funding application for a large new project to the Dream Fund of the Dutch Postcode Lottery. This project could become a game-changer in this area of leprosy work. If successful, it will fulfil our dream of stopping the transmission of leprosy bacilli.
Zero disability due to leprosy is a global target. People affected by other neglected tropical diseases (NTDs) or diseases causing nerve damage, such as diabetes, have similar needs. Prevention and (self-) management of disabilities can be achieved more effectively and efficiently if done in an integrated or combined manner, either by integrating wound care and rehabilitation in the health services or through combined self-care groups in the community. The objective of KPP2 is to develop and disseminate new strategies and interventions to help achieve the target.
Full inclusion in society and equal opportunities in life are the main targets of rehabilitation and development of people with leprosy-related and other disabilities. An important mechanism for inclusion is participation in Disabled People’s Organizations (DPOs). NLR decided to work on and advocate ways to promote participation of people with leprosy-related disabilities in DPOs and to include their needs in literacy, income generation, education and other development programs.
Stigma and discrimination are invariably ranked as barrier no.1 by people affected by leprosy and often by people with other disabilities also. NLR will include strategic attention for the reduction of stigma and discrimination in each KPP, scaling up the new interventions developed in the SARI project and promoting their use by national leprosy programs as per the WHO Global Leprosy Strategy.
Leprosy and other NTDs cause disabilities and social exclusion for many millions of the poorest people worldwide. Very little is being done to address their needs, because data are lacking on their number, the types of disabilities and the nature of their needs. In collaboration with the NTD NGO Network (NNN), NLR is developing a toolkit to measure the disease complications and disabling aspects of NTDs, the NMD Toolkit. Following initial groundwork in Brazil in 2015, 10 additional studies were done in 2016 to test tools from the toolkit in Colombia, Mozambique, Nepal and Indonesia. The results and the NMD Toolkit itself are made available free of charge to the NTD community around the world.
The international Leprosy Post-Exposure Prophylaxis (LPEP) project is coordinated by NLR in some districts in 3 countries where NLR is active: Indonesia, India, Nepal. The project, sponsord by Novartis Foundation, aims to provide a single dose of rifampicin to contacts of new leprosy patients in order to reduce the risk that they also get leprosy. In India alone more than 20,000 contacts already received the preventive medication. The National Leprosy Eradication Program in India is so excited about the method, that they have decided to roll it out widely in other areas where leprosy is common. In Indonesia, Sampang district in East Java province was the first to start providing rifampicin routinely as preventive medication in 2012. The graph below shows a tentative declining trend in the number of new patients.
Infolep is the key source for information on leprosy and related subjects. The portal offers access to >26,300 publications, of which >4,000 are open access. In 2016, Infolep attracted 33,512 unique users from all over the world, a 14% increase compared to 2015. A new portal layout was launched in the summer of 2016. The monthly newsletter with new publications was sent out to 936 subscribers. Almost 200 (literature) requests were processed. Infolep has close to 1,000 followers on Twitter and 300+ on Facebook. The service is financially supported by eight partners.
InfoNTD is the one-stop source of information on cross-cutting issues in neglected tropical diseases (NTDs). The portal was launched in May 2016 and by the end of 2016 offered access to around 2,400 publications. More than 1,700 are open access. The portal attracted on average 550 visitors per month from 13 countries. There are 922 subscribers to the monthly e-newsletter and 270 followers on Twitter. Nine partners support InfoNTD financially and with expert advice.