The Leprosy Mission Impact Report - 2021
Aim: The Leprosy Mission's aim is to achieve zero transmission of leprosy by 2035. This means that we need to detect and treat cases of leprosy early.
The Leprosy Mission Impact Report -2021
Zero Transmission
Four steps to ending leprosy
Aim: The Leprosy Mission's aim is to achieve zero transmission of leprosy by 2035. This means that we need to detect and treat cases of leprosy early.
Covid presented challenges in 2021
Detecting new cases of leprosy means that healthcare workers need to visit towns and villages in order to examine people who have leprosy symptoms (active case finding). It can also requires individuals to travel to health centres or leprosy hospitals to receive diagnosis and treatment.
In 2021, both of these things were more difficult than normal because of pandemic restrictions.
Just like in 2020, fewer people were diagnosed with leprosy in 2021 than we would expect.
This does not mean there are fewer leprosy cases, but that fewer people were diagnosed and started treatment. We now have a two-year backlog of cases.
If a person is diagnosed late and if they are infectious, they will continue to transmit the bacteria in their community.
Although the Covid pandemic has been a big setback in our efforts to stop leprosy transmission, we have a plan to make up for lost time.
As you will see in the coming pages, the data we have collected in recent years demonstrates that our plan will work.
(Cover photo credit: Ala Kheir)
1. Active case finding, contact tracing, & preventative medicines
Active case finding
Active case finding means visiting communities and actively looking for new cases of leprosy.
How effective is active case finding?
In 2021, TLM Timor-Leste worked with government health workers to conduct active case finding in five municipalities. They spent between 14 and 24 days in each municipality, visiting homes and schools.
In previous years, these municipalities had fewer than 20 cases of leprosy. In 2021, 58 people were diagnosed with leprosy.
Contact Screening and preventative medicines
Leprosy is not a highly infectious disease. Most people who develop the disease have been in close contact with an infectious person over a prolonged period.
In order to find new cases of leprosy, one of the best places to start looking is amongst the people who are close contacts of a newly diagnosed person. Contact screening is key to identifying and treating new cases of leprosy.
For any close contacts who do not display symptoms of leprosy, we can provide them with a preventative antibiotic (known as post-exposure prophylaxis, or PEP for short). This reduces the risk of developing leprosy by 60 percent.
In 2021, TLM supported projects screened 472,859 close contacts for signs of leprosy
In 2021, our teams in Indonesia, Bangladesh and Nepal were able to treat 20,580 close contacts with PEP.
66% of all newly diagnosed cases had contacts screened by TLM in 2021
2. Strengthening national health systems
Health systems in leprosy endemic countries are under-resourced and the health workers have to manage many diseases, so have less time for leprosy.
This is why TLM is working with governments to help them strengthen their health systems for early detection and treatment of leprosy.
In 2021 we provided 40,894 days of training on leprosy to medical & para medical staff.
PROYASH - AMBITION
Proyash translates as 'ambition'. The Proyash project in Bangladesh has been able to strengthen government health systems in 12 districts across Bangladesh by:
Improving quality of leprosy services through a more responsive health care system
Improving efficiency in surveillance, monitoring and evaluation through an improved health management information system
Improving health seeking behaviour among those affected by and at risk of leprosy
Improving social and financial protection by reducing stigma, discrimination & promoting social inclusion of persons affected by leprosy
3. Improving leprosy health information systems
TLM's Global Strategy commits us to tackling leprosy in key endemic areas.
Currently, much of the data we have focuses on national-level leprosy cases. The sub-national data shows us the new case trends, identifies where community transmission is ongoing and therefore tells us what specific interventions are needed in that district.
This means we need to identify which districts, towns, and even villages are responsible for the highest numbers of leprosy cases.
The Leprosy Mission will strengthen our data collection of new leprosy cases at the local level, so that we and our partners can plan leprosy operations and target the areas that are responsible for ongoing transmission.
4. Improving leprosy diagnostics
Leprosy diagnosis today is conducted by checking for skin and nerve signs and symptoms, and is backed up by slit skin smears in the laboratory. This can take several days, or even longer for the laboratory confirmation.
In short, diagnosing leprosy today is a long and difficult process.
Our scientists are currently working on diagnostic tools that would allow us to identify leprosy within minutes. This could be done in communities and would not require a health centre or lab.
Investing in research will also allow us to better understand how leprosy is transmitted and how this transmission can be stopped.
Our scientists are responsible for monitoring people who relapse of symptoms and instances where the antibiotics used to treat leprosy are not working (anti-microbial resistance).
Three types of diagnostic tools that our teams are working on:
- A finger-prick test which would diagnose leprosy within minutes using a very small blood sample, much like diabetes tests.
- Using a spectral imaging through a smartphone to identify leprosy skin lesions.
- A PCR test, much like those used to diagnose Covid. This would work through a nasal swab.
Since 2018, TLM has increased its investment in research more than six-fold.
Through these four steps, we believe that, even with setbacks caused by the Covid pandemic, it will be possible to end the transmission of leprosy by 2035.
We can be the generation to end a disease that has harmed humanity for more then 4,000 years.
Towards Zero Leprosy Disability
We are pleased to see that TLM continues to make progress in the area of disability.
Our hospitals and health centres offer world class disability care to large numbers of patients.
These figures are a testament to the hard work of our healthcare teams since our current strategy started in 2019.
Cover photo credit: Ollivier Girard
Aim: Reduced disability burden in people affected by leprosy and a transformation of physical, mental, emotional and spiritual wellbeing of people affected by leprosy
TLM is an innovator in the area of disability
Healing wounds faster with LPRF
Our team in Nepal are working on a transformative new treatment that heals wounds faster than any other treatment.
The LPRF treatment (Leukocyte Platelet Rich Fibrin) sees wounds dressed with bandages soaked in a dressing made from the patient's own white blood cells.
This approach encourages healing and is providing dramatic results.
Providing simple solutions
Our team in India are working on a new type of cast for patients with ulcers.
These casts will be removable, which provides ulcer patients more freedom than any current cast options.
This approach is cost-effective and promotes better healing.
This practical solution can be implemented with readily-available casts across the world.
Supporting low-resource settings
Our team in Nigeria are exploring the possibility that honey could be used to promote healing of leprosy ulcers in low-resource settings.
The healing properties within honey mean that honey dressings could be applied to wounds on patients that are far from the nearest health centre.
A nurse implements the new LPRF treatment in Nepal. Photo credit: Sabrina Dangol
Improving disability care by making it more local
Our disability care within hospital settings is of a very high standard.
However, we know that few leprosy patients live within a close radius of these hospitals and health centres.
In order to improve disability outcomes for persons affected by leprosy we need to grow disability services within the communities we serve.
This is something we are already doing in India, Bangladesh Myanmar, and Nigeria.
We hope to expand this kind of care in the future.
Our mobile disability units are providing support to people in the community
As well as providing mobile units, our teams are working on improving access to inclusive rehabilitation services.
This means making good use of nearby government health services so that persons with leprosy-related disabilities can receive rehabilitation care outside of leprosy-specific contexts.
We will continue to work with health centres to ensure they are trained to provide leprosy care and breaking down any stigma-related barriers that might prevent patients from accessing treatment.
Improving disability care through better monitoring
Another way that we can improve the disability care we offer is through better monitoring of leprosy-related impairments.
We believe there is more that we can do to monitor patients for early signs of nerve damage and prevent the worsening of existing disabilities.
Leprosy is cured by Multi Drug Therapy, taken for 12 months. Leprosy-related disabilities can occur after MDT treatment is completed, so we need to better monitor patients during and after MDT treatment.
Improving disability care through better self-care practices
Self-care in the leprosy context means equipping persons affected by leprosy with the skills and knowledge they need to care for their bodies and the complications that leprosy can cause.
TLM is approaching this problem in a number of ways.
In Myanmar, Timor-Leste, and DR Congo we are working with local churches to provide self-care support within communities.
In India, Papua New Guinea and Timor-Leste we train family members to support persons affected by leprosy with their self-care.
Self-care groups that meet regularly in countries across the world also encourage one another in their self-care habits.
Our team in India are working with communities to develop locally specific self-care guidelines. They determine what local challenges might limit self-care adherence and develop solutions in collaboration with the community members.
Towards Zero Discrimination
Towards Zero Leprosy Discrimination
Aim: Greater inclusion of, and justice for, people affected by leprosy and disability and people affected by leprosy confidently standing up for their rights
We are making good progress in the area of zero discrimination.
We are seeing more people affected by leprosy accessing sustainable livelihoods, employment and training, and health. All this contributes towards the UN's Sustainable Development Goals.
The data points you can see here are testament to the progress that has been made in this area as our community-based projects foster greater inclusion in society.
The power of collective voice
TLM encourages persons affected by leprosy to become members of existing Leprosy People’s Organisations (LPOs), Disabled People’s Organisations (DPOs) and other community groups (farmer producer groups, value chains, and women’s groups); especially those that are registered with the government and part of the wider disability movement.
This gives our clients greater visibility, voice, legitimacy and access to rights and entitlements.
Self-advocacy continues to be an area of growth
TLM works to develop leprosy champions. These are people who have lived experience of leprosy and can use that experience as powerful self-advocates.
We train these individuals so that they feel confident to speak on up for themselves and use their own voice. Then we work with them to identify opportunities to speak effectively.
Self-advocacy triumph in Bangladesh
Our team in North Bangladesh used to be the first port of call for local governments who wished to understand a disability issue.
We started to introduce persons affected by leprosy into these conversations.
These persons had received training through our extensive network of self-help groups in Bangladesh.
Now, 15 years after the self-help projects were started, the local governments no longer come to TLM for information, but go directly to the leprosy champions themselves.
Read more about this work here >
Social inclusion is improving
Each year we survey persons affected by leprosy with regards to social inclusion and feelings of worth.
In 2021, we received the best response we've ever had to this survey question, with 95 percent of persons surveyed reporting that they have experienced improved social inclusion in their communities.
We believe this success could be because TLM retained focus on persons affected by leprosy throughout the Covid crisis and ensured an inclusive response from governments and other organisations.
We continue to engage with the United Nations
Engagement within the UN's disability framework
In 2021, more persons affected by leprosy spoke at the UN's CRPD Conference (Convention on the Rights of Persons with Disability) than at any previous conference.
This engagement within the wider disability sector is laying the foundations for growth and a greater collective voice for persons affected by leprosy.
Engagement within the UN's Human Rights Framework
In 2021, TLM filed a Universal Periodic Review report with the UN Human Rights Council. The report detailed the human rights situation of persons affected by leprosy and persons with disability in Papua New Guinea.
The Human Rights Council has asked the government to take action on a number of the issues we highlighted.
As well as this victory, we also presented members of the Human Rights Council with a petition on the subject of discriminatory laws. This petition followed a successful online campaign in countries across the world.
We asked the members of the Council to remember these laws when they are reviewing the human rights situation of one of the offending countries.
We hope that, in the years to come, more countries will hear from the Council about their discriminatory laws.
TLM has been working with persons affected by leprosy to create a greater awareness of leprosy within the wider disability sector and within the UN's human rights framework.
Now that we have established the foundations of this space, we aim to create stronger partnerships and strengthen our collective voice within these wider networks.
We aim to support persons affected by leprosy as they hold governments to their commitments to the UN's human rights and disability rights frameworks.
TLM's Faithful Supporters
We are very blessed to say that TLM's supporters have remained faithful throughout the pandemic.
At the start of 2020 we feared what the incoming crisis would do to our income and our ability to support persons affected by leprosy.
Now, nearly three years later, we look back with immense gratitude.
TLM's selfless supporters recognised the harm the pandemic could cause to the lives of persons affected by leprosy and they stepped up with a commitment we did not see coming.
We are in the right position thanks to you
The latest data from the WHO shows us that the number of people who were diagnosed with leprosy in 2020 and 2021 is a long way down on the numbers diagnosed in previous years. This means fewer people are receiving the treatment they need to be cured of leprosy.
These people need to be identified and treated as soon as possible. Thanks to the selfless support of our donors, we are in an excellent position to make up for the time we lost during the pandemic.
Because of you, we remain confident that zero leprosy transmission is still possible by 2035.
Thank you. God is good.
