Brent Morgan and Clara Volpi
Thoughts from our International Director, Brent Morgan, and our Head of Operations Support, Clara Volpi.
The Leprosy Mission is working towards a goal of zero leprosy transmission by 2035. At around 4,000 years old, leprosy is one of the oldest diseases on the planet. To say that we could have an end to the transmission of the disease within touching distance might be considered by some as a highly aspirational claim, but these goals are needed in order to mobilise and push the envelope. Sadly, our 2035 goal has been made even bolder by the Covid-19 pandemic.
With access to diagnosis and treatment so significantly curtailed during long periods of lockdown and restrictions, particularly in Asia, we can reasonably believe that community transmission is going to increase over the next few years, as people have remained untreated and infectious.
©Mahinthan Someswarapillai
This is a significant setback, but one that could prompt a renewed effort to tackle leprosy transmission. Alongside the pandemic, we saw the release of the new WHO Global Leprosy Strategy, which, amongst its four key goals, targets a 70 percent reduction in new leprosy cases detected by 2030. That goal is a really exciting one and is at the heart of our own 2035 goal.
Below we detail some of the reasons that we are not going to change our target of zero leprosy transmission by 2035. Please have a read and tell us what you think.
The WHO’s Global Leprosy Strategy provides an encouraging projection for new case detection between now and 2030. This projection is based primarily on three things; contact tracing, preventative chemotherapy (post-exposure prophylaxis – PEP) and active case finding.
There is much agreement over the fact that contact tracing, preventative chemotherapy and active case finding will significantly disrupt leprosy transmission. As the WHO’s projection shows, we should be targeting an 70 percent decrease in the annual number of newly detected leprosy cases by 2030.
What remains to be seen at this point is whether we will have the political will to enable PEP, contact tracing, and active case finding and management to work, because they certainly will not be successful without government partnership.
The new WHO Global Leprosy Strategy 2021-30 is already proving crucial for encouraging governments to take the role of contact tracing, preventative chemotherapy and active case finding seriously. We should not underestimate the power this document has to help us generate political will by demonstrating that we can bend the transmission curve. We have a solid business case. TLM has seen increased governmental engagement because of the WHO Strategy in DR Congo, Papua New Guinea, and Timor-Leste.
So, if the new WHO Global Leprosy Strategy is starting to help us force open the door to government engagement and finding political will, then the next question is, do we have the tools to make this strategy a reality?
Here we have significant reason to feel hopeful. TLM has made field-friendly diagnostic tools one of our key research focuses and our teams are currently working on two that we hope could prove transformative, both of which can be used while screening contacts of leprosy cases.
In Bangladesh, our team have been researching the efficacy of a finger-prick test that could diagnose leprosy within five minutes, much like a diabetes test. They hope that this test will be able to help us find early stage leprosy and asymptomatic leprosy cases.
Meanwhile, in Nepal, our researchers are considering whether we can use smartphones to detect leprosy through spectral imaging. This process is already used for skin cancer and would see a small piece of kit added to a smartphone so that the phone could detect leprosy lesions.
Both of these tools are currently under development and we hope they will be ready well ahead of 2030. They could place instant diagnosis into the hands of fieldworkers across the world, allowing them to test and treat a higher percentage of people than ever before.
Organisations of persons affected by leprosy have been growing in recent years thanks to support from TLM and other NGOs. They have grown both in number and in their strength as long-term, sustainable organisations.
As well as this, we are seeing more and more persons affected by leprosy acting as self-advocates. Between 2018 and 2020, our data shows that TLM has trained 11,966 self-advocates who are now equipped to present their cases to local, national and international governments. In fact, more persons affected by leprosy spoke at the UN’s major Disability Rights (CRPD) Conference in 2021 than ever before.
Why is this important in the fight to defeat transmission? Firstly, because self-advocates are the most powerful advocates. We have seen across TLM that governments are more likely to respond to the needs of people affected by leprosy and other neglected tropic diseases (NTD) when they express it themselves.
© Ruth Towell
For example, OPALCO is a newly formed organisation of persons affected by leprosy in DR Congo that has already had several meetings with the Minister of Health. Whilst we can present governments with the latest data about the efficacy of PEP and other initiatives, and provide plans for reducing transmission, all of this is so much stronger when voiced by people affected themselves.
Secondly, organisations of persons affected by leprosy are uniquely well placed to raise awareness and support communities. In Myanmar, MAPAL has been sending self-advocates to communities to raise awareness of leprosy. Meanwhile, in Ethiopia, ENAPAL members are helping to identify new cases and are following up with newly diagnosed cases to ensure they are keeping to their MDT regimen.
Good monitoring systems are the Satnav on our journey to zero leprosy transmission. We have to track ourselves against the goal of 70 percent fewer new cases by 2030 and zero transmission by 2035.
At TLM, we have invested in tracking the Key Performance Indicators for our 2019-2023 Global Strategy. Meanwhile, ILEP have made improving monitoring and data a crucial part of the newly released ILEP strategy 2021-25. Through this monitoring, we can track our progress towards our goals and adjust course where necessary. The more data available, the better.
© Tom Bradley
This data collection is also another tool in our toolbox when we speak to governments. As we saw earlier in The Leprosy News, TLM’s team in Timor-Leste was able to illicit significant government support for contact tracing by demonstrating its efficacy through data. As we get more data about contact tracing, PEP and active case finding, we will be better placed to make the case to governments and donors to demonstrate that zero leprosy is achievable.
At the start of the pandemic, there was significant reason to fear that funding would become an enormous issue. TLM are very grateful that our supporters maintained their commitment to persons affected by leprosy and the fight to defeat leprosy and our fundraising income has thankfully increased since the start of the pandemic.
Not only this, but the leprosy sector has been building a stronger pitch to major funders and governments. We can now demonstrate to would-be funders that they can be a game changer in the elimination of a major disease. Humanity has only wiped out one other disease in history (smallpox) and the leprosy sector is increasingly well-placed to point funders towards the next disease for humanity to eliminate. TLM has seen the benefits of working with our partners on consortia bids with this messaging over the last few years.
As we have said, humanity has only ever eliminated one disease before, and that monumental achievement was certainly not achieved by any one group or organisation alone. Likewise, leprosy will only be eliminated by working in partnership.
Once more, we have good reason for hope. Partnership has run as an unspoken theme through all of the above.
The WHO Global Leprosy Strategy is the result of major collaboration from a huge number of stakeholders. Meanwhile, or own PEP activities would be impossible without expertise and knowledge sharing from NLR. On top of this, our advocacy with governments has been more powerful and more successful when it has happened jointly with other in-country ILEP partners.
The finger-prick test is being developed in partnership with Dr Annemieke Geluk and her team at Leiden University Medical Centre in The Netherlands. The smartphone diagnostic project is possible thanks to funding from American Leprosy Missions and The St Francis Leprosy Guild, and is informed by the knowledge, skills and expertise of Prof Janis Spigulis and his team at the University of Latvia.
As ever, organisations of persons affected by leprosy are crucial partners and we are so pleased that they grow in size and number every year. Without them we can do nothing. Over the last few years we have grown our partnerships together as they provide us with messaging, advocates, and ideas to guide our work.
© Ricardo Franco
As we mentioned, ILEP has made data collection a key part of the latest ILEP strategy. This will be achievable only if ILEP partners work collaboratively on data.
Lastly on the above, working in partnerships on funding consortiums has enabled us to move further than any of us could have managed on our own.
As well as all the above, we have seen that playing an active role in the development of GPZL’s leprosy roadmap in Mozambique is a tangible way to drive momentum and willingness within a country. These GPZL road maps are a brilliant opportunity for collaborative thinking and gathering in stakeholders who can become invested in the fight to defeat leprosy within their country. We are also blessed by partnership within the NTD sector from the NTD NGO Network (NNN) and Uniting to Combat NTDs.
Over the coming issues, we hope The Leprosy News will play a small part in that commitment to partnership as we share knowledge and experience from within TLM and hope to engage in a dialogue with all of our global partners.
Do you have an opinion on what is written above? Write to us at newsletter@leprosymission.org and we will share it in the next issue of The Leprosy News.
© Cover image: Fabeha Monir
