The Leprosy News, Q1, 2022
A new quarterly publication from The Leprosy Mission that provides insights, knowledge, and opinion to strengthen the leprosy sector.
The Leprosy News
Issue 1, Quarter 1 2022
Welcome to The Leprosy News
Dear reader,
Thank you for joining us for the first issue of The Leprosy News.
This is a new initiative from The Leprosy Mission's International Office. Each quarter we will share with you insights, data, learning, and opinion from across TLM's Global Fellowship.
We hope that sharing knowledge in this way will play a small role in strengthening the leprosy and NTD sector. We hope to start conversations, prompt new thoughts, and connect more dots between our work and yours.
In this issue you will find interviews with some of our top contact tracing practitioners, a recent paper from TLM on the issue of leprosy and climate change, and an article from myself and Clara Volpi on why we are standing by our goal of zero leprosy transmission by 2035, despite the setbacks posed by Covid-19, as well as the latest leprosy stories in the news.
We want this resource to be a part of a conversation. Each issue will provide opportunities for you to respond with your own thoughts and opinions by email. Please do take the time to share your thoughts with us and we will publish the top comments in the next issue of The Leprosy News.
Thank you again for joining us here and happy reading!
Brent Morgan
International Director,
The Leprosy Mission
Contact Tracing: How do we get it right?
Insights from teams who have been working on contact tracing and found ways of making it successful.
Contact Tracing: How do we get it right?
When the WHO released their Global Leprosy Strategy 2021-2030, one of their four key pillars called for the sector to ‘scale up leprosy prevention alongside integrated active case detection’. A crucial part of that is contact tracing, both to help us identify new cases and to administer a post-exposure prophylaxis (PEP) to prevent the development of symptoms.
The available data suggests that contact tracing is going to be indispensable if we want to reach a world without leprosy transmission. Mass contact tracing efforts in Viet Nam have seen the country go from more than 1,400 cases per year in 2000 to around 40 cases in 2019, including zero child cases in 2018, 2019, and 2020. In other encouraging findings from northwest Bangladesh, a total of 1,985 new cases were found after screening the contacts of just 9,884 index cases.
“Alongside its role in the prevention of leprosy, contact tracing is the most productive tool for finding new cases and may be the key to leprosy control in the next ten years” Global Leprosy Strategy 2021-2030 p.16
Whilst the efficacy of contact tracing is not in doubt, there are still many countries and communities with limited experience of contact tracing. Over the coming pages we share the experiences of three TLM countries, Bangladesh, Nigeria, and Timor-Leste, who have found ways to overcome challenges surrounding contact tracing, as well as engaging government partners effectively with the process.
What does contact tracing look like in your country?
Bangladesh – Mr Jiptha Boiragee
In Bangladesh, 90-95 percent of the household contacts of each index case will be screened for leprosy by The Leprosy Mission. As well as this, around 30-40 of the surrounding households will be screened. We’ve found this to be a great source of finding new cases.
Of course, the extent of the case finding activities is dependent on local capacity. If there is local capacity, we aim to follow up with contacts once a quarter. Where there is not capacity, we will aim for once every six months. For us, this has proved to be the biggest source of new case detection.
Timor-Leste – Mr Francisco da Costa
In Timor-Leste, this process is a collaboration between the government health services and us. We aim to reach the household and neighbouring contacts of every single index case. We do our best to train the government health workers so that they can identify new cases themselves, although there are many who are not confident to do that, so our team still does a lot of the contact tracing.
In just two of our high-endemic municipalities, these efforts allowed us to identify 80 new cases of leprosy between January and June 2021. In three of our low-endemic municipalities, we were seeing an average of two or three new cases a year. Once we started contact tracing in those communities, we found 18 new cases.
Nigeria – Mr Pius Ogbu Sunday
We have developed a household contact screening pathway. This pathway is activated every time an index case is identified and will be carried out by the General Healthcare Workers in the community.
The worker will agree a date to visit the index case, they will be introduced to the contacts, and they will seek permission (using a consent form) to do a screening. If the contact does not have leprosy, they will be provided with PEP. If they are found to have leprosy, they are provided with MDT. The workers will collect data on what they have seen and will send that to TLM Nigeria and the Government Leprosy Control Programme Unit.
What challenges have you encountered and how have you overcome them?
Timor-Leste – Mr Francisco da Costa
Covid-19 caused our project some problems. When there were big outbreaks of Covid-19 in a community in Timor-Leste, the government would initiate mass testing in the community. If a person tested positive for Covid-19, they would be moved to an isolation centre. This was a problem for us because we would arrive in a community and the community members would assume we were there to do Covid-19 testing and they would hide from us or refuse to be tested.
Clear communication around contact tracing for leprosy and increasing community awareness of this was important while we overcame this challenge.
Like many places around the world, a lack of leprosy expertise among community health workers was a problem. We’ve found they are much more confident about the contact tracing and diagnosis process when our teams are with them. Hopefully we can build this confidence so they can do the work on their own in time.
Bangladesh – Mr Jiptha Boiragee
Capacity is always going to be a challenge for contact tracing. The cost is not just staff time, but also includes travel and accommodation. This is a reality that we have to face, but we know that contact tracing is one of the most effective tools we have. If we’re going to end leprosy transmission, we have to prioritise contact tracing, especially if it can be paired with PEP.
Another difficulty for us comes from working through the government systems. Sometimes they can be reluctant to register a certain number of new cases if they know they do not have the right amount of MDT to treat all the cases. It does not look good for them, so they can refuse to do report some cases until the next round of reporting.
We have a good relationship with the government services, so that helps us to work through this challenge.
Nigeria – Mr Pius Ogbu Sunday
There are two intersecting challenges for us. The first is a lack of government funding and the second is a dwindling leprosy expertise among health workers.
We have been able to handle both of these problems through our TLM-funded case finding projects, as well as the Ready4PEP project in collaboration with LTR. The Ready4PEP, project is a pilot of PEP implementation in Nigeria. We have been demonstrating to the government that contact tracing and PEP are going to help us dramatically drive down the numbers of new leprosy cases each year. There is a tangible sense of excitement about this within Nigeria, which is helping with our advocacy efforts.
The TLM funded case finding projects have also allowed us an opportunity to train health workers in the focus communities and increase their confidence in identifying and diagnosing new cases of leprosy.
Getting government ownership and enthusiasm for administering PEP has been the key to making these efforts successful. Demonstrating the potential success of the project was crucial.
What would you say to others who are considering their own contact tracing programmes?
Nigeria – Mr Pius Ogbu Sunday
This really would not be possible without close partnership with the government, as we recognise that they own the programme. We need to support the capacity building of the health workers and the lab technicians to bridge the gap in leprosy expertise and make this possible.
I would encourage others to demonstrate the power of contact tracing to their government partners and get them excited about the opportunities. Then set up a sustained training and mentoring system for the health workers and lab technicians so that leprosy becomes a part of their regular work.
We have also been partnering with traditional healers and patent medicine vendors. We have trained them to recognise leprosy and set up referral pathways through them.
Timor-Leste – Mr Francisco da Costa
We would agree that training local health workers is crucial for our programme. We have been working with our government partners to demonstrate that contact tracing is effective and that the WHO is making this a crucial part of leprosy work. Colleagues from WHO Southeast Asia have helped us make this case to the government.
We also invited some of the leprosy and NTD staff at the Ministry of Health to join us while we conducted contact tracing work. When they did the tracing themselves and saw that it worked, they took it a lot more seriously.
These discussions are giving us opportunities to move contact tracing forward. Through this, we’re able to increase training opportunities for local community workers. I’d encourage anyone else who is considering how to develop this work to maintain those good relationships with government partners. You need to be able to show them the potential impact, even if it means taking them into the field to see for themselves.
Bangladesh – Mr Jiptha Boiragee
The WHO Global Leprosy Strategy 2021-2030 is already looking towards contact tracing, but many national strategies are not yet. We have to encourage and support governments to change their systems and incorporate contact tracing.
You should tell your government partners that, if they can invest money, the NGOs are in a position to offer our teams, our expertise, and our networks to help them make this a reality.
This is one of the very best ways to interrupt leprosy transmission. It simply has to be done if we are to eliminate leprosy.
What is the greatest challenge you face with contact tracing?
- Lack of support from government partners
- Lack of health worker expertise
- We don't have experience of how to do contact tracing
- Community members would not cooperate with contact tracing
If you have reflections, comments, or questions about this article, please email them to newsletter@leprosymission.org and we will include a selection in the next issue of The Leprosy News.
Bridging the divide between health, social development and environmental interventions: an example from The Leprosy Mission
Bridging the Divide Between Health, Social Development and Environmental Interventions
Climate change is increasingly affecting countries where leprosy is present. This is damaging the lives of persons affected by leprosy and making it harder to end leprosy transmission.
In 2021, James Pender of TLM England & Wales published a paper looking at the climate crisis and leprosy.
James' paper considers the direct and indirect impacts of climate change on leprosy, the increased vulnerability of persons affected by leprosy due to climate change, and examples of how environmental concerns can be integrated into health programmes with salutary outcomes for both health and environment.
As James concludes, environmental concerns do not obviously interlink with the goal of defeating leprosy, but thinking more deeply shows that the link is real and cannot be ignored.
© Cover image: Ricardo Franco
Leprosy and climate change facts
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Leprosy colonies in Mumbai are located along storm drains that flood annually
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4,000 leprosy affected farmers in Northwest Bangladesh were impacted by unprecedented flooding in 2017
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Rice harvests on farms of 'leprosy villages' in Myanmar failed in 2020 as rainfall patterns changed
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We know of people in Nepal who have struggled to get to higher ground during flooding because of leprosy-related disabilities
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Also in Nepal, we have heard of people arriving at shelters during flooding, only to be turned away due to leprosy stigma
Leprosy and climate change stories from Bangladesh
Moitiur has been left jobless by climate change. He was diagnosed with leprosy in 2008. This didn't stop him from making a good living at his tea stall near Dawood Khali River. That was until erosion of the river destroyed his business overnight. He lost his income, profits, and life savings.
Since losing his tea stall, Motiur has been searching for work, a task made much harder by leprosy. In an attempt to cover his basic needs of food, medicine, and other essentials, Moitur took on labour work, but this ultimately made him more sick and weak.
“How many times will I have to pay for frequent cyclones? What can I do to recover from financial loss? How can I remove this extreme salt from my shrimp farm?”
Sheikh is the leader of a seven member family and a shrimp farm. He was first diagnosed with leprosy in 2021. Flooding and cyclones in Bagerhat added to Sheikh's struggles.
The damage caused by the flooding and cyclones throughout his life has had a big impact on Sheikh. He has had to rebuild his home and his farm eight times.
The climate has harmed Sheikh's shrimp farming as excess salt in the water is affecting the quality of his product. The physical challenge of removing this salt is made harder by leprosy.
Opinion: Covid-19 has slowed progress, but we believe zero leprosy transmission is possible in the next 13 years
Brent Morgan and Clara Volpi
Opinion: Covid-19 has slowed progress, but we believe zero leprosy transmission is possible in the next 13 years
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.
Strengthened prevention and detection initiatives have to be the starting point
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.
Finding the tools to equip our fight to defeat leprosy
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.
The role of persons affected by leprosy is increasing
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.
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.
Data and monitoring can give us a guide and a resource
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.
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.
Financial commitment has not disappeared
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.
Partnership is non-negotiable
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.
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
What do you think will be the biggest contributor to achieving zero leprosy transmission by 2035?
- Contact Tracing
- Post-Exposure Prophylaxis
- Active Case Finding
- Field-Friendly Diagnostics
- Advocacy to Increase Govt. Ownership
- Improved Data and Monitoring
Leprosy in the News
All the headlines, including 'the good, the bad, and the ugly'
Nepal hospital trials ‘life-changing’ treatment for leprosy wounds
Doctors at a Nepal hospital trialling a new treatment for skin wounds say the technique, which mimics the scabbing process, has “enormous potential”
Read more >
Foreigners in Russia outraged by new medical checks
From the end of this year, foreigners working in Russia must be tested every three months for diseases like syphilis and leprosy, and for drugs. Foreign business associations are appealing to Moscow to revise the rules.
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Skull dating back nearly 200 years found on uninhabited Caribbean island shows evidence of leprosy
The remains were found on Petite Mustique, a small island in the Caribbean nation off St Vincent
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Leprosy is sadly still very much with us - whatever Paul Baldwin thinks COMMENT
It suggested that those who refuse a Covid vaccine should be sent to what ‘in the good old days’ were ‘leper’ colonies. As the Chief Executive of The Leprosy Mission, I’d like to confirm that leprosy is very much a 21st Century disease.
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Amend laws that affect leprosy-hit:NHRC
The National Human Rights Commission (NHRC) has urged the Centre, states and Union Territories to remove “discriminatory” legal provisions against leprosy-affected persons in the laws of the country.
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The Nigerian woman whose life changed when she visited a leprosy colony
In our series of letters from African writers, Nigerian novelist Adaobi Tricia Nwaubani writes about a woman whose life changed after she got a skin ailment and later visited a leprosy colony.
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Speak against anointed pastors and carry leprosy, Oyedepo warns Nigerians
David Oyedepo of Living Faith Church says that speaking ill of prophets ordained by God and their activities is dangerous, warning that it attracts punishment of leprosy.
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Leprosy has a Cure, so has Prejudice, says Miss Universe Brazil
Julia Gama, Miss Brazil Universe has worked with Morhan to deliver food baskets to people affected by Hansen’s disease, with support from the Sasakawa Health Foundation.
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