The story of Mohammed

Mohammed’s family feared his leprosy. He was locked up indoors and was refused permission to go outside. He now travels the villages to spread the word that leprosy can be cured and that the people affected by it, should not be locked away.

“When the first signs of leprosy emerged, I thought I was superman. My one arm had become numb. I could hold a match to it and not feel a thing. When my neighbours said it was leprosy, my parents’ world, and with it my own, collapsed.

My parents thought my illness was a punishment from God. I was no longer allowed to go outside the house. They hid me indoors and gave me a separate room. I always sat in the same chair, ate from the same plate with the same cutlery, and used my own towel. Not only my parents but the rest of my family too, feared my leprosy.

These days were the darkest of my life. Even today, the memories of it can bring me to tears. After a year, by accident, my parents discovered that one of our neighbours had also had leprosy but had been cured. It was only then that I was I taken to a clinic. Three years later, I too had been healed. But the consequences of the disease haunt me to this very day, 28 years later.

My brothers and sisters continue to be ashamed of my illness. Often the stigma attached to leprosy affects a person much longer than the disease itself. That’s why I’m so motivated to fight leprosy.

I’m the chairman of a group that was set up by people who were affected by leprosy. Together we fight the disease on East Java. The situation has improved a lot already. People affected by leprosy used to be completely cut off from their environment. Nevertheless, our work remains important. Every year, four thousand people become affected by leprosy in this area.

Together we visit villages to spread the word that leprosy can be cured and that people affected by the disease should not be locked away. Very important also, are the conversations we have with religious leaders. They can play a major role in the reduction of stigma. Just like the families of people affected by leprosy. Medication cures leprosy, but full recovery is only possible with family support.

Reposted with permission from NLR – originally published in November 2019 here.

The Leprosy Vaccine

In 2002, the American Leprosy Missions (ALM) began a partnership with the Infectious Disease Research Institute in Seattle, Washington to develop a vaccine for leprosy.

An investment of 17 years and more than $6 million has resulted in LepVax: a vaccine that finished Phase Ia clinical safety trials in healthy human volunteers and is headed into Phase Ib among people most at risk.

Phase Ia results 

In the summer of 2019, the 18-month Phase Ia clinical trial for LepVax was completed. This study was the first step in testing LepVax for clinical use. Phase Ia was designed to demonstrate the vaccine’s safety and to evaluate the immune response to the vaccine.

The study showed that the vaccine was extremely safe and resulted in no serious adverse events. The FDA recommended that the LepVax candidate proceed to the next phase of clinical trials.

Why now?

LepVax is the first leprosy-specific vaccine to go through Phase I clinical trials. ALM believes this vaccine will be an exciting new way to stop the transmission of leprosy and the only way to protect people from the disease long-term. What’s more, the vaccine may protect against nerve damage, the most serious complication of leprosy.

Phase Ib

The Phase Ib clinical trial preparations have begun, and participant enrolment is expected to begin in the next few months. The trial will run for two years. Thirty healthy participants and 24 patients with pauci-bacillary (PB) leprosy will be enrolled. After showing the safety of the vaccine in the Phase Ib study, Phase II clinical trials of LepVax will begin.

Progress and next steps

• August 2017:  Approved by Food and Drug Administration
• October 2017:  Started Phase Ia clinical trial
• November 2017: Interim safety review successfully completed
• January-March 2018:  Complete injections of second cohort; perform last blood draw; begin one-year follow-up period
• June-December 2018:  Complete clinical sample processing; analyse data and clinical immunology
• January-March 2019: Analyse data and clinical immunology; write clinical study report
• August 2019:  Completed Phase Ia clinical trial
• July 2019 – July 2021:  Two-year Phase Ib clinical trial in Brazil
• 2021: Phase II clinical trials

Read more about the clinical trials and the results from Phase Ia here.

Reposted with permission from the ALM – originally published in November 2019 here.

First World NTD Day

The first World NTD Day will be on 30 January 2020 – the same as World Leprosy Day in India (in the rest of the world it will be on 26 January 2020).

Announced on 19 November 2019 at the Reaching the Last Mile Forum, World NTD Day will be an annual opportunity to bring attention to the 1.6 billion people affected by NTDs.

Organised by Global Health Strategies, 30 January was chosen because of the date’s link with the London Declaration, which was signed in 2012. In 2020, they see World NTD Day as the start of a campaign that proceeds through the adoption of the NTD Roadmap at the World Health Assembly (May) and its promotion at the next Commonwealth Heads of Government Meeting in Kigali (June). The Kigali event is being promoted as the ‘Next London Declaration’ where governments and other leaders will be encouraged to make commitments in support of the Roadmap goals.

Though World Leprosy Day is on this date in India and a few days earlier worldwide, the leprosy community still has the opportunity to amplify its messaging around World Leprosy Day to new audiences. Ensuring that leprosy is actively included in whatever advocacy and support is built with governments can only positively reinforce the community’s messaging.

Organisations who would like to support World NTD Day have been invited to supply logos here.

InfoNTD and Infolep launch new websites

The InfoNTD and Infolep websites are now ready for you to visit. They have all new functionalities and a much friendlier design.

If you work in the fields of Neglected Tropical Diseases (NTDs) or leprosy (as a researcher, programme manager, M&E officer, policy maker, or health professionals), the new Infolep and InfoNTD have information that might be very relevant to you. On the InfoNTD and Infolep websites you can find over 30,000 subject related publications and tools. New features include a service which answers FAQs and to which you can upload questions, and icons that quickly identify open access literature. Key improvements include a more user friendly design, qualitative search results and specific filter options so that you can find exactly what you are looking for. Moreover, the accessibility to the portals is enhanced and adapted to ensure fast navigation in low-resource settings. Content on both websites is constantly being updated. You can also sign up for their monthly newsletter which shares a selection of the latest publications that have been added to the platforms, so that you don’t miss any new developments in your field of interest. For any questions, suggestions, comments or compliments, please email info@infontd.org or info@infolep.org.

Workshop explores how to scale up PEP and advance research

The Leprosy Research Initiative (LRI), NLR, and the Global Partnership for Zero Leprosy (GPZL) hosted a 4-day workshop in Amsterdam, 5-8 November 2019, to discuss issues related to post-exposure prophylaxis (PEP).

PEP involves the use of preventative antibiotics given to close contacts of people diagnosed with leprosy, such as family members or neighbours.

For this workshop, researchers and programmatic partners came together to work out common country packages for implementation and to develop proposal outlines to advance PEP research. The workshop was composed of two distinctive groups, one focusing on research and one on operations. The groups worked separately but had daily exchange sessions to feed relevant topics in each other’s agendas.

The operations group developed three specific country profiles: PEP start-up; PEP scale-up; and PEP last-mile. These profiles will help countries with preparing, implementing and evaluating PEP into their national programmes. The tool developed for this workshop will be uploaded in the Zero Leprosy Toolkit with detailed examples. The results of this operations group will also be documented into a joint publication.

The research working group initially focused on the four topics in the context of PEP: (1) PEP targeting and delivery; (2) New regimen; (3) Mapping; (4) Modelling and Investment Case. One concrete idea that will be further developed over the coming months is a decision matrix which will include a number of indicators that may have a differential impact on the choice of PEP strategy in different endemic settings. Such a matrix will assist countries in choosing the most preferred PEP strategy and when finalized will be included in the GPZL Toolkit.

Both groups worked on their specific tasks, but time for daily exchange was arranged so draft plans could be presented between the two groups. During one of the days, Dr. Anung Sughantono, Director, General Infectious Diseases, Ministry of Health, Indonesia shared two important lessons:

1. PEP brings new hope to the health workers and local programme managers; and
2. PEP helps the community to sense that leprosy is preventable. Mr Joshua Oraga of IDEA Kenya, reminded participants again of the importance of engaging persons affected by leprosy as experts in all activities.

This was the first workshop of its kind organized by GPZL, LRI and NLR. Lessons from this workshop will help organize future workshops. To review best practices for PEP, visit the Zero Leprosy Toolkit.

Reposted with permission from the Global Partnership for Zero Leprosy – originally published in November 2019 here.

Country review and next phase of the Operational Excellence Working Group

The Global Partnership for Zero Leprosy (GPZL) has done its second country review – this one in Morocco – and will be reorganising the Operational Excellence Working Group to work further on the toolkit and related helpdesk; technical support; and advocacy around the ongoing implementation of the GPZL country models.

Country review: Morocco

This was the second GPZL country review after Nepal. Morocco, a ‘last mile’ country, was a valuable contrast from Nepal. The review team recorded progress in the National Leprosy Programme and made recommendations on how to overcome challenges, especially those that arise when new case numbers are low, and accelerate the achievement of zero leprosy. Outputs included the outlines for medium- and long-term roadmaps to zero leprosy, to which the Moroccan Government is strongly committed. See here for more information.

Operational Excellence Working Group: next phase

Since its formation, the two main tasks of the Working Group have been to develop the GPZL country model and the Zero Leprosy Toolkit. Both are well advanced. From January 2020 the Working Group will be reorganised around three ongoing tasks:

• the toolkit and the related helpdesk;
• technical support, for example in the design and implementation of zero leprosy roadmaps, workshops, webinars, training manuals, etc.; and
• advocacy around the ongoing implementation of the GPZL country models, including support for national partnerships for zero leprosy.

NTD Roadmap 2021-2030

ILEP and its Members have been very involved in the development of the new Neglected Tropical Disease (NTD) Roadmap.

With the NGO NTD Network (NNN) partners we have worked closely with the World Health Organization’s NTD Department to ensure that the Roadmap has a clear focus on NTDs, like leprosy, that have consequences in terms of disease management, disability and inclusion. We have also worked closely with the Global Leprosy Programme on the content of the disease-specific pages in the Roadmap.

The Roadmap will not be finalised and adopted until 2020, but Dr Erwin Cooreman has shared with us what is expected to be the final leprosy content of the Roadmap. Annex 2 contains the overall Roadmap targets. Some of the more notable targets, from the leprosy perspective, are:

• Number of countries that adopt and implement integrated skin NTD strategies; and
• Share of countries including NTD interventions in their package of essential care services and budgeting for them.

Leprosy is one of the three disease targeted for elimination (that is, interruption of transmission). The specific target is that the number of countries with zero indigenous cases will rise from 50 in 2020 to 120 in 2030.

The leprosy specific pages of the Roadmap carry much more detailed information. Here there are three targets for leprosy for 2030:

• Annual number of new cases detected down to just over 62,000 (a 70% reduction).
• Rate per million population of Grade-2 disability down to 0.12 (a 90% reduction).
• Rate per million children of new child cases down to 0.77 (a 90% reduction).

The targets are followed by detailed assessments of the current status and the actions required if the targets are to be achieved. ILEP recommends a close study of these pages which will govern WHO’s approach to leprosy over the coming decade.