NLR Highlights 2023

Final phase of clinical trial in ‘Stop the transmission of leprosy!’ (PEP++) project

In our project ‘Stop the transmission of leprosy!‘ we seek evidence for the effectiveness of a new preventive regimen (PEP++) to combat leprosy. In the clinical trial we were able to increase the intake across the four countries — Bangladesh, Brazil, India and Nepal – from 8,000 at the end of December 2022 to 112,600 one year later. This means that 70% of the full sample of study participants have taken either PEP++ or SDR-PEP with a clear and achievable timeline to complete the remaining recruitment by March 31^st, 2024. Thus, the biggest milestone of the study is a mere three months of fieldwork away. The follow-up of study participants, which will determine who has been protected by the preventive treatments offered to them, started in Brazil in October 2023. This critical phase will also begin in Nepal in August 2024 and India in December 2024. Then we will begin to have answers as to the effectiveness of PEP++ compared with SDR-PEP. All this is possible thanks to the strong partnership with the Dutch Postcode Lottery and The Leprosy Mission International.

The value of the PEP4LEP skin camps

In Ethiopia, Mozambique and Tanzania, skin camps were combined with the distribution of preventive medication for leprosy (single dose rifampicin). In Ethiopia and Tanzania, the PEP4LEP study team gathered information about how people visiting the skin camps experience the way the camps are set up, the medication they receive and the fact that a dermatologist looks at their skin problems. For many people accessing healthcare services is difficult, and the PEP4LEP team found that bringing the health care to the community was very much appreciated and very valuable. People who normally do not have access to a doctor or medicine for skin problems, now received the skin care they urgently needed. In addition, community members attending the skin camp were very happy to take the medicine that would protect them from developing leprosy.

Early results of this project were shared via various international platforms, including the EDCTP Forum in Paris in November 2023 where PhD students from Ethiopia and Tanzania presented their PEP4LEP work.

The project is funded by the European & Developing Countries Clinical Trials Partnership (EDCTP2), supported by the European Union, and by the Leprosy Research Initiative (LRI). Read more about the PEP4LEP project.

Ready4PEP successfully implementing project on all health levels in Nigeria and Mozambique

The Ready4PEP project has made significant progress last year as activities were scaled up and the Nigeria team achieved their targets on SDR-PEP introduction, reaching more than 22.000 contacts. A scientific article was published on leprosy capacity in health facilities and among health workers in Nigeria. In Mozambique, the Ministry of Health has taken up various recommendations from the Ready4PEP project to make its leprosy control programme more effective. This was the result of advocacy activities by the project team presenting concrete results of effective changes achieved at district and provincial level. It brought leprosy back on the agenda of the national health authorities. A project extension until end of 2024 was granted which allows us to further consolidate the results in both countries.

Shifting the power continues: NLR Indonesia and NLR India now national NGOs

In the ever-changing global context and current zeitgeist a different way of working is required. No more setting the agenda in the global north and implementing in the global south. The number of leprosy patients has decreased dramatically, although the disease remains present. A new approach to leprosy control is needed. More responsibility was allocated to all the project-countries so that national and local problems get appropriate solutions. Country offices were turned into national NGOs to reflect this change.

A path to decentralize the organization differently was initiated in 2014. This shift in power led to an alliance of equal national NGOs. Each alliance member appointed its own Supervisory Board. During a careful transition process, clear frameworks and agreements were made.

The Nepal office was the first to complete this transition in 2022. Since 2023, NLR India and NLR Indonesia also operate independently. As an alliance, we are still working toward one and the same goal: a world without leprosy by 2040. The new multi-year strategy was entirely created through consultation with all countries and layers of NLR staff worldwide and key stakeholders: donors, leprosy patients, partners and industry opinion leaders. The overarching goal is national ownership. While the transition is still in progress, the positive impact is already visible: “Stakeholder ownership is increasing significantly. The organizational structure is being revised to be more efficient and effective and closer to the community as an independent organization,” said Asken Sinaga, former Director of the national NGO in Indonesia

NLR’s SkinApp added new diseases and is now part of the WHO Skin NTD App!

A new version of the NLR SkinApp has been launched, updated with four additional skin diseases / conditions. These have been added as a result of the validation studies that have been done.

• Folliculitis, Keloid scar and Urticaria were often seen in people presenting with skin problems in Tanzania, Ethiopia and Mozambique. To improve the performance of the app these diseases have been added.
• Noma has been added, though not officially on the list of NTDs, it is a serious condition starting with skin lesions, and a neglected disease.

In October 2023, the WHO announced the release of an enhanced version of its Skin NTDs App, a valuable tool designed to support front-line health workers in diagnosing and managing skin-related neglected tropical diseases (skin NTDs). This exciting development is the result of a collaborative effort between WHO and NLR. The content of the NLR SkinApp was merged into the new WHO app. Findings from the SkinApp validation study, which is part of NLR’s PEP4LEP project, were also taken up in the new WHO app. The updated WHO Skin NTD App is downloadable free of charge on both Android and iOS phones.

Donor Meeting in the Netherlands

In September, NLR organised a donor meeting for Dutch individual donors to show our appreciation for their support to a world free from leprosy and its consequences. In the H’Art museum (former Hermitage) in Amsterdam we informed the donor on leprosy, current issues and progress on specific projects they’ve contributed to. It was great to meet donors in-person and to hear from them why they feel it is so important to support our cause.

From Words to Action: How NLR contributes to meaningful participation of persons affected by neglected tropical diseases (NTDs)

Over the course of 2023, NLR was closely involved in the development of the NTD Inclusion Score Card (NISC). The NISC enables organisations to track and measure inclusion and meaningful participation of persons affected by NTD, such as leprosy in policy and decision-making processes. NLR has been part of the development process of the NISC and thought along about how to address the different aspects of inclusion and participation. In 2023, a delegation of NLR colleagues from the Netherlands, Indonesia and India, together with persons affected by leprosy piloted the NISC in their respective offices. In September, several colleagues were involved in the launch of the NISC at the NNN conference in Tanzania. The process has helped NLR to identify what is already going well in the way we include persons affected by leprosy in our work, we have also identified areas for improvement and are sure to work on these 2024!

The NTD Inclusion Score Card and linked resource materials can be downloaded from www.infontd.org/nisc

Published research in 2023

Science is knowledge. Science is progress. Science brings us closer to a world without leprosy. As inquisitive people, NLR staff frequently gets scientific articles published in well-regarded scientific journals. Here you can find a selection of articles published in 2023 on stigma, prevention, funding and more.