This leprosy elimination tool provides opportunities we cannot afford to miss
Opinion from Wim van Brakel, Medical Director of NLR, with Tim Burton, Global Communications Lead at The Leprosy Mission
In the battle to end transmission of leprosy bacteria, there is rightly a lot of attention for diagnostic tests, preventative treatment, and the potential for a leprosy vaccine. However, there is a new tool that has so far flown under the radar, but its release could prove a pivotal moment on the journey to zero leprosy transmission.
This year, the World Health Organization (WHO) are going to release the Leprosy Elimination Monitoring Tool (LEMT) on their website. The tool has been developed by a WHO taskforce that was chaired by Wim, with much of their work happening over the course of the Covid pandemic. After several years of hard work, the tool was formally launched in July 2023. However, the LEMT has not yet been publicly released because a major upgrade was still outstanding.
If the tool is used well by the leprosy sector, it could provide pivotal insights to national leprosy control teams on their progress towards interruption of transmission and elimination of leprosy disease. In addition, it also holds significant opportunities for fundraisers, advocacy specialists, and communications teams. They are opportunities we cannot afford to miss.
Last year, the WHO Global Leprosy Programme published the ‘Technical guidance on interruption of transmission and elimination of leprosy disease’ alongside details of its two associated tools: the Leprosy Elimination Monitoring Tool and the Leprosy Programme and Transmission Assessment.
Whilst the LEMT publication on the WHO website currently details how the LEMT will work, the tool itself will only be released in the coming months. It will allow countries to input sub-national case detection data and produce data analysis and mapping according to the new Leprosy Elimination Framework that has so far not been available to the leprosy sector.
Up until now, countries have been looking at leprosy case numbers at the national level; they see that their nation is diagnosing a large number of cases each year, most often with a slowly declining trend. But what they cannot not see in national-level data are the districts that have been slowly but surely interrupting leprosy transmission over the past 5-20 years. They do not see that their work is having an impact at district level and where they are in relation to the new elimination milestones. With this new tool they will be able to see for the first time as their country goes from red to green district by district.
The LEF provides the core framework for indicators and new milestones for interruption of transmission and elimination of leprosy disease. The LEMT is the accompanying monitoring tool that will allow us to visualise progress at district or any other level through the trajectory towards elimination of leprosy.
Until recently, most countries were still using the indicator of ‘elimination of leprosy as a public health problem’, which is ‘fewer than 1 new case in 10,000 population’. This has caused problems, since the achievement was not accompanied by communication about the meaning and expectations that were appropriate for this interim achievement. Since this indicator is based on prevalence rather than incidence, it was to be expected that new cases would continue to appear. However, use of the term ‘elimination’ without managing expectations led to much confusion and was damaging to many aspects of leprosy work, such as research and fundraising. With the advent of the new Global Strategy for Leprosy 2021-2030 and the new Technical guidance on interruption of transmission and elimination of leprosy disease, this indicator has now been replaced by incidence-based indicators and milestones.
The WHO’s new elimination indicators are much clearer. There are three stages to eliminating transmission:
Phase 1: No new autochthonous cases among children for at least five years (autochthonous means indigenous cases, rather than cases from migrants)
Phase 2: No new autochthonous cases for at least three consecutive years (and no new child cases in five years)
Phase 3: No or only sporadic autochthonous cases for a period of > 10 years
This results in non-endemic status, which means leprosy is not normally present in an area or a country. Although sporadic cases may occur.
With the LEMT, countries and districts will be able to effectively map and track their progress towards clearly defined elimination goals. The tools help them to anticipate when the goals are likely to be met. This is a game-changer in monitoring in the leprosy world.
Once a country believes it has reached the end of Phase 2, they can submit a Leprosy Elimination Dossier and invite the WHO to visit their country and verify that they have eliminated leprosy. An interim verification of interruption of transmission was done for the first time in the Maldives in December 2023.
Towards the end of last year, Wim was invited to meet with WHO regional office representatives to explain the tool and its potential. Following this, in-person and hybrid sessions are being planned at the WHO regional levels.
The first session took place in Armenia, as the WHO’s Europe region has a number of countries that have already eliminated leprosy and they want to receive the WHO certification.
The next step in this process will be to engage national governments and provide them with the technical support they need to get or prepare data in a format that can be used in the LEMT.
However, there is a challenge for the countries that are already close to leprosy elimination. Because of the very small case numbers in these countries, resources for leprosy activities are non-existent and thus leprosy expertise is understandably low. In most of these countries, ILEP Members do not have an active presence. For that reason, ILEP is looking at the possibility of its Members adopting countries that are working towards the final stages of elimination and providing technical expertise to help them finish the ‘last mile’.
Across ILEP Members and national leprosy control teams, there are obvious opportunities here for programmes teams. But the one we’d like to highlight first is the importance of changing the narrative.
Because new cases of leprosy are appearing all the time, it is hard for our programmes and medical teams to feel hopeful about the future of eliminating leprosy. It feels like there is still so much work to be done. This new tool gives us a new perspective.
For the first time we can truly see how far we have come. And when programmes are able to see how much progress has been made over the past 5-20 years, they start to feel real hope. In many countries, we are interrupting transmission and eliminating leprosy one district at a time, but this is often not visible because the focus is on national data and annual statistics, rather than long-term trends at sub-national levels. Be encouraged. Be inspired to lead the way within your local districts.
Beyond this, serial maps of the elimination phases at subnational level show us what progress is being made. They show which districts have made such good progress that they can move to low-endemic strategies, for which criteria have been defined in the WHO technical guidance document. The ILEP Technical Commission has recently added a set of strategies for low-endemic areas that is planned to be published in 2024. In addition, the maps show which districts or areas require more resources and a more intensive focus.
The current tools and approach to data monitoring obscures the reality for our programmes. India, for example, is considered to be a high-endemic country, accounting for around two-thirds of leprosy cases globally. However, there are over 100 districts in India that have already achieved Phase 2 of the elimination process. These are the districts that can move to low-endemic strategies whilst other areas of India need a continue intensive elimination efforts.
Another crucial opportunity for our programmes teams is looking forward, as well as looking back. Knowing that the end of Phase 2 is reached when no new autochthonous cases are detected for at least three consecutive years, you can see how many years have already been achieved and project forward, anticipating when the next phase will be reached. Planning can start for what you will need to do when you are there.
It is here that we see the importance of partnering with countries who are on the verge of leprosy elimination. As we partner with them, we will learn what steps need to be taken to move from Phase 2 to Phase 3 and, crucially, how much this would cost. By the time higher-endemic countries reach this stage, we will have learned many practical lessons to guide the transition process.
For each of these disciplines, the LEMT tool has huge potential.
Perhaps the greatest potential is how it adds to our business case. Governments and major donors want to know how their resources will have an impact. The LEMT provides us with a chance to get an accurate cost of leprosy elimination.
In high-endemic areas, like parts of India or the Comoros, the path to (and cost of) ending transmission remains a little hazy. However, once you have achieved the Phase 1 milestone, the horizon becomes clearer.
We can plot a roughly 8-year path from Phase 1 to Phase 2. Once we have smaller numbers of new leprosy cases within a district (close to single figures), then it becomes possible to calculate how much it would cost to find and treat those individuals. It is also possible to calculate the cost of finding 20 of their close contacts and providing PEP (preventative medication). Through this, we can get the cost of moving from Phase 1 to the elimination of leprosy.
This makes applications for major funding much easier and would make it easier for us to convince governments to part with resources for the Last Mile.
Again, all of this is more achievable if we reach out to the countries that are already transitioning to the final phases of the elimination journey. It is through them that we will learn exactly how much the process will cost and how long it might take.
Within advocacy, there is an opportunity to make use of the data that comes from the LEMT, but there is also a responsibility to encourage governments to engage with the tool. Some governments have already adopted the tool eagerly, but others may need a little more convincing.
For fundraisers, the serial mapping provides an opportunity to demonstrate tangible impact to donors. Those donors who have been giving for decades will be able to see how a country’s map has transitioned from red through to green over the period they have been giving.
For communications teams, we have an opportunity to change the narrative. Many NTDs have successfully charted the global journey towards elimination. There are periodic announcements of countries who have eliminated Buruli ulcer, trachoma or lymphatic filariasis. These announcements come with fanfare and celebration; they create a narrative of a disease that is beatable.
Within communications, we have a responsibility to start this process for the leprosy world. We should partner with ministries of health to celebrate the districts and the nations that have moved to a new phase of leprosy elimination. We can communicate a message of momentum and success.
This message of progress, coupled with news of new diagnostic tests and enhanced regimens of preventative medication, will put us in position to engage the kinds of high-level funders that are interested in big-picture change. Through the LEMT, we will be able to show them the path to elimination of leprosy disease for all countries.
Cover photo credit: Ricardo Franco