Going behind the numbers: the progress we have made under our 2019-2024 strategy, and what it teaches us about how we move forwards
Viewpoint from Pierina Dsouza, Global Lead for Monitoring, Evaluation, and Learning
In The Leprosy Mission, there is rightly a lot of excitement about the development of our new Global Strategy 2025-30, which is due to launch in November. I think we have much to be excited about as we look forwards.
We have a better understanding of leprosy than ever before, of the biological, medical and social determinants of the disease. We also recognise the significance of collaboration within The Leprosy Mission, with people affected by leprosy and with stakeholders beyond. There is a greater commitment to innovation and learning.
As we move from one organisational strategy to the next, this is the time for a reflective pause, to study the journey so far. To look at the programmes, policies and processes that we believe bring positive change to the lives of persons affected by leprosy and their communities, and what evidence might exist to support these claims.
At TLM’s International Office, we collate the data that our teams send to us each year and we present the progress made by TLM as a global organisation. We look at the scores to tell us where we have made progress and where our progress is delayed or severely delayed.
In my opinion, these scores tell us part of the story. The other part, that which gives meaning to the scores, is the people, processes and partnerships behind the numbers. Here is where reflective learning lies.
So, I want to take some time to celebrate with you and share what I think we have learnt from my perspective as TLM’s Monitoring, Evaluation & Learning Lead. I hope there will be lessons in here for people in TLM but also for those working elsewhere in the leprosy and NTD worlds.
I want to start on a note of celebration. The 2019-2024 strategy was the first time efforts were made to define a global strategy for the whole Fellowship. It was the first time that TLM came together to develop a common vision of what our work should look like over the next five years, if we are to defeat leprosy. The strategic aims were scoped and areas of priority identified in alignment with the WHO Global Leprosy Strategy and its targets of zero transmission, zero disability, and zero discrimination. For the first time, we had a common focus and agreed upon indicators by which we would measure our work and progress at a global level.
Because this was a new approach within The Leprosy Mission, there was much we had to learn, unlearn, modify and innovate as we journeyed together with a common vision and a commitment to greater cooperation. All of this new knowledge is a reason for celebration; it takes us closer to a world without leprosy.
I want to highlight some of the key successes under each of the three zeroes.
When we wrote the current strategy in 2018/19, we had no indication of the disaster that awaited us with the pandemic. Arguably, the greatest set back from the pandemic was that leprosy detection was delayed further due to interruption in health systems, case finding activities and travel restrictions.
However, our data over the past two years shows recovery, that Active Case Finding and PEP have grown massively over recent years. Not only have we found and treated more people - especially more women and children - we have provided preventative medication to many. We have done this in partnership with government run health services and other stakeholders, including ILEP partners and civil society organisations. This has led to a re-activation of the national leprosy control programme in many of our countries.
Our commitment to removing leprosy related stigma and discrimination, which often prevents people from seeking treatment, has led to collaboration and partnerships with community groups including socio-economic groups and faith groups. Through these partnerships, these groups are now more engaged in leprosy awareness, case referrals and treatment follow up in the community.
Worthy of special mention here is our success in enabling leprosy champions and organisations of persons affected by leprosy to be intrinsically involved in this process and a lot of our work.
I’m particularly encouraged by Mozambique, where their holistic approach has been effective in identifying new cases early on. The decentralised model here is based on grounding the leprosy control programme in the community, with integration and close strategic collaboration with the health ministry at multiple levels.
These efforts in Mozambique are founded on leprosy committees, where health workers, community focal points, community volunteers, community leaders, faith leaders, and traditional healers work alongside persons affected by leprosy. Together they ensure holistic, inclusive and sustainable support for persons affected in the community.
The preventative health and community empowerment model adopted by the PHACE project in Bougainville - now extended to Papua New Guinea, Timor-Leste and Kiribati - is another success story. It addresses the social determinants of leprosy and builds on the agency and resourcefulness of the community. This model is especially relevant for countries with poor health infrastructure and topographical challenges that make travel and transport very challenging. These are models that could and should be replicated.
There is a lot that we know about disability management now that we did not know in 2018/19. This is due in large part to innovative research like the RIGHT Project, through which we have learnt so much about caring for ulcers.
It is even more encouraging to see how seriously we have approached the sharing of this knowledge, particularly with Dr Indra Napit travelling around the world to teach hospital teams about the LPRF method of healing ulcers.
Leprosy complication management and rehabilitation now reaches more persons affected by leprosy in some of the remotest areas. This is thanks to the innovative use of assistive technology, mobile clinics, community-based rehabilitation centres, and the use of digital technology to support video consultations with specialist teams in our hospitals.
This period has also seen us come to acknowledge the magnitude of the mental health needs of our clients and we have increased our commitment to meet this need. Today many of our programmes include provision of psychosocial support through peer counsellors, trained staff and referral pathways for more serious cases.
The collaboration with community-based groups such as Self-Help Groups, Self-Care Groups, and Organisations of Persons Affected by Leprosy will receive a mention in every section. This is because of its significance in our progress towards achieving each goal in an efficient, inclusive and sustainable way.
The innovative work of TLM Bangladesh in partnership with the ALO Society is one such example. The ALO Society members have taken on the role of community volunteers, supporting patient follow-up and self-care practice at home and with family support. This includes setting up video consultations with specialist teams at DBLM hospital. This initiative won the NNN Innovation prize in 2022. The team was also invited in 2023 to share this practice at the Bergen International Conference on Hansen’s Disease: 150 Anniversary. This is the kind of innovation and collaboration we need to strengthen and replicate.
There is a slow but growing shift from perceiving persons affected by leprosy and our other clients as ‘beneficiaries‘ of our services, to acknowledging their right to health and development, and their agency in partnering with us to defeat leprosy.
One of the important developments is adopting the Community Based Inclusive Development approach to further the rights and inclusion of persons affected by leprosy in their communities. This system also helps facilitate holistic and sustainable support in the community.
Our data shows that we have achieved greater inclusion for persons affected by leprosy and an increase in accessing rights and entitlements from governments thanks to partnership with community leaders and community groups. This includes faith groups, women’s groups, OPDs, OPLs, and socio-economic groups such as saving groups.
In many countries, the OPLs have gone from strength to strength and our teams have been closely involved in contributing to their organisational strength and independence. Now more than ever, persons affected by leprosy are aware of the rights that are owed them and are clearer on how they can collectively achieve these rights. Of course, there’s still progress to be made, but we should also look back and acknowledge – and even celebrate - how far we’ve come.
Outside of the three zeroes, I want to highlight the role of research in recent years. We have been more intentional and strategic about funding research, which has led to crucial breakthroughs. Our research teams have also had more opportunities to collaborate and share knowledge, which can only be a good thing. I look forward to more breakthroughs especially in the area of leprosy diagnostics and reaction management. I also look to more intentional embedding of the research findings into our programmes, in the way we deliver on interrupting transmission and reducing disability.
Photo credit: Sabrina Dangol
Since 2019, we have become much better at collecting reliable and comprehensive data, and also getting better at seeking to know the reasons behind trends, shifts in trends and data gaps. If something is going well, we are much better at asking why this is going well and how this could be replicated elsewhere. If something is not going so well, we seek to know where the problem lies, what is not enabling progress, or even preventing us from moving forwards.
For example, in the early days of contact tracing, we could see the numbers were just not shifting. We realised that the expectation for patients to bring their household contacts to hospitals and health units to be screened was not realistic; nor was it possible for health workers assigned to the health centres to leave their work and travel far into the community for contact tracing and screening.
So we asked what would enable successful contact screening in different local contexts. Different countries used different approaches, but all of them involved the crucial element. They used community health volunteers and community workers to mobilise community leaders and community groups so that they would raise awareness of leprosy, aid in detecting cases, and engage in contact screening. Once we saw this trend, we were able to learn and spread knowledge across the organisation.
We are a global organisation, which comes with advantages and disadvantages. The advantage is that we are doing a lot of work in a variety of ways, meaning that we have a lot we can teach each other and our partners about what has worked and what hasn’t worked. The disadvantage is that it is easy to forget to share what we’ve learnt, especially when we are so geographically dispersed.
We have gotten better at sharing our knowledge and experience, showcasing good programmes and learning together. I hope we will become more intentional about this. We also need to look outside the Fellowship and become open to learning with and from our partners. We will need to be deliberate about doing this, investing in it with time, resources, and patience.
All of this is not to say that we couldn’t improve. Of course we could and should.
Creating long-term impactLooking at the data over recent years, I have seen how our projects can be effective in bringing about the change that will lead to us achieving long term objectives and goals. Sadly, as the project closes when funding closes, so too does the change, often ending the cycle before it can make sustainable impact. This leads to a loss of learning and value, which if sustained, would lead to evidence based sustainable impact.
For example, we have done great work to support healthcare workers and community volunteers in active case finding, including contact screening for distribution of PEP. A great deal of work, time and resources goes into training and mobilising the community-based actors and developing systems that support this process. For a year or two, we will work alongside the healthcare system to keep this work effective. Together we collect data on index cases, contacts screened and given PEP, and new cases diagnosed and started on treatment.
Photo Credit: Daniel Christiansz
Then the funding period comes to a close, the project ends, and we see that commitment and momentum in the healthcare system begins to evaporate. We leave it to the government to take over, but often they are unable to match the level of support needed to sustain this change and to ensure that active case finding and contact screening become integrated into the work of the primary health care system. We don’t go back to see whether the intervention has led to a reduction in leprosy cases and interruption of transmission in the area.
To have long-term impact we need to have funding that doesn’t drop off dramatically, but is more consistent over longer periods to allow for systemic, lasting changes in health systems.
We also need to invest in social capital in endemic communities; we cannot always be present in a community, but the members of that community will be. By encouraging community leaders, faith leaders, and OPLs to raise awareness of leprosy and encourage people to come forward for treatment, we are creating pathways for sustainable transformation.
Disability services in AfricaAt TLM, we are considered leaders in the field of leprosy complication management and rehabilitation. This is thanks to expertise, innovative technology, and dedicated doctors and clinical technicians in TLM hospitals and TLM supported hospitals.
However, this quality care does not extend to many of our clients in more remote areas and there appears to be big gap in disability services in Africa. This means a gap in service provision but also in leprosy expertise. Governments have a responsibility to provide these services but they are stretched for resources, and so even basic treatments are not being made available. Because we have a responsibility to persons affected by leprosy, we have a responsibility to hold governments accountable for providing these services. We also have a responsibility to support resource-starved governments in providing these services to our core client group through collaborations and partnerships.
Securing safety netsOur livelihoods programmes are often designed to meet and match client interest and local market demands in a holistic way. There is evidence of an increase in regular income in mid-term project evaluations, enabling people on the path to being self-sufficient.
However, there are also known hurdles that can disrupt and often even derail all progress. For many people, leprosy is a chronic illness. There can be long periods of illness that prevent people from earning a living. There are also any number of things outside of our control that affect livelihoods: natural disasters, conflict, and pandemics, to name a few.
This has the potential of setting people backwards on their livelihoods journey. Because of this, we need to ensure government safety nets are appropriate and accessible to persons affected by leprosy. When a person goes through a period of illness or faces a temporary setback, they should not lose their livelihoods and all their income.
Firstly, be encouraged. We have achieved so much together in recent years – as TLM and with our partners. We have talented and committed staff and we are trusted by our clients and partners. We are committed to working together as a Fellowship under Christ. Let’s acknowledge and celebrate this.
Second, let’s make sure we learn from our experience. We may be transitioning from one strategy to another, but there is much value and learning we can carry over and much we can grow and improve upon.
Third, set realistic goals and targets. We should have aspirational goals, and develop clear roadmaps towards these goals, identifying the milestones that will enable us to track progress. Let us set progressive targets that are grounded in the time, resources, and staff allocated. Let us identify the collaborations and partners that will help us move towards our goals faster and more sustainably– and lets move the goalposts if circumstance demands it.
Few funders are interested in funding leprosy-specific work at the moment. As we pivot to access funding related to the climate crisis, gender equity, and other ‘current topics’, we should always ensure that persons affected by leprosy are benefitting from our work. In my job, I will never stop asking that question: how many persons affected by leprosy were involved in this project?
Lastly, let’s continue our culture of learning. If something works, let’s find out why and how we can replicate. If something doesn’t work, find out why and how that can be fixed. If it can’t be fixed, it shouldn’t be continued.
Cover photo credit: Ala Kheir