Reflections on the 20th ILC

By Paul Saunderson

The overall impression from delegates is that the International Leprosy Congress (ILC) 2019 was successful in bringing together, in an attractive setting, people from many different walks of life, with an interest in leprosy.  

The Philippine International Conference Center in Manila, provided with the support of the Philippine Ministry of Health, was an ideal venue – spacious, comfortable and accessible – while the organisers ensured that the sessions ran smoothly and on time. Staff were always available and helpful. The farewell dinner party was really impressive and the concluding video was well-produced and captured all the key moments. However, it was difficult for people to access the second floor in a wheelchair.

The atmosphere was excellent and delegates seemed enthusiastic with the new strategies and studies. A lot of new faces and young people participated in the Congress. One of the strengths of the ILC was the opportunity it presented for interaction between laboratory scientists and clinicians: an opportunity which was well-utilised.

The Global Partnership for Zero Leprosy (GPZL) workshop was welcomed and well-attended. It encouraged countries to think about country reviews and roadmaps. This momentum will certainly be followed up at the next ILC (in 2022 in India). But there was not much eye-opening research that attracted the audience’s attention. There was no obvious controversy or disagreement during the Congress; no public discussion was heard about WHO new guidelines on therapy of leprosy, although there were some adverse comments about chemoprophylaxis and the investment on vaccine development. 

Following a number of invitation-only pre-Congress meetings (for example, several ILEP and GPZL meetings, as well as a number of research committee meetings), the opening session demonstrated the key partnerships in the field of leprosy: 

  • National governments, represented here by the host country – The Philippines;
  • The International Leprosy Association and The Nippon Foundation;
  • WHO, ILEP, GPZL and Novartis; and
  • People affected by leprosy and their organisations.

Plenary sessions with invited speakers, taking approximately 50% of the time available, covered a wide range of important topics: leprosy and other NTDs, human rights, the Leprosy Research Initiative (LRI), the management of reactions and neuritis, neuropathic pain, chemoprophylaxis, early diagnosis, vaccines, ‘The New Face of Leprosy’ and structural biology. Fifty-six parallelsessions for presentations of free papers occupied the other half of the time, with 340 oral presentations. There were also 382 poster presentations.

Other statistics:

  • Participants: 1,012 (Male 53%, Female 47%); 41% from the Philippines; 59% from elsewhere.
  • Countries represented: 55, including India (108 delegates); Nepal (47); China (39); and Brazil (37).
  • Age of participants: Age under 30 years 12%; aged 30-60 years 72%; age over 60 years 16%.

Epidemiology and leprosy control

The quality of both oral and poster presentations was good. There were relevant studies about epidemiology and control, and diagnostics and prevention. There were studies on active case findings aimed at early diagnosis and curbing transmission. Some were based on household contact tracing or working with vulnerable populations. It would have been useful to have a ‘state-of-the art’ lecture on the evidence base for active case finding policies, including key indicators needed to monitor such activities. There is still uncertainty about how to reach contacts and other at risk groups with active case findings. Another area of uncertainty is how to increase the coverage of contact examination, which in some studies was relatively low (around 60%). In general, proposed solutions should be tailored to the epidemiological burden – for instance, coverage of the whole population in highly endemic areas.

Chemoprophylaxis, or post-exposure prophylaxis (PEP)

As may have been expected, there were a great many presentations on this topic. Dr Peter Steinmann presented an overview of chemoprophylaxis research, pointing out that the evidence of efficacy was proven by the COLEP study, while feasibility for household contacts and neighbours was shown in the LPEP programme, in which single-dose rifampicin (SDR-PEP) was given to 151,928 contacts in seven countries (Brazil, India, Indonesia, Myanmar, Nepal, Sri Lanka and Tanzania). Dr Steinmann concluded that PEP is a very promising new tool which motivates leprosy outreach programmes and as it is always combined with active case findings and contact screenings, it enhances early case detection. Possible limitations of PEP were aired briefly in the discussion, emphasising the need for ongoing research and careful attention to the data coming out of all PEP projects.

The session on transmission in clusters was very interesting and sparked a lively discussion on how to interpret the data. There is a need for further work on cluster analysis and how to target PEP effectively in different epidemiological settings. The use of mapping tools will help with this analysis.

Social aspects and People’s Organisations

The biggest challenges discussed was how could we realise the goal of zero stigma? There were a lot of discussions and new approaches developed to address prevention, early diagnosis and treatment, but there was not much discussion about how to reduce stigma and discrimination. There was no agreement on a clear goal for zero discrimination.

The Workshop for People’s Organizations (by invitation), was chaired by Dr Takahiro Nanri and Tesfaye Tadesse. The workshop shared experiences from three people’s organisation – Morhan (Brazil), HANDA (China), and ENAPAL (Ethiopia). Morhan shared their experiences on advocacy and social movement to influence the authorities and the public. HANDA focused on the sustainability of people’s organisations, suggesting that they should try to build up their own capacity and accountability before they could be sustainable. ENAPAL shared their experiences of participating in different areas of leprosy services and stressed the importance of networking with people affected by leprosy. After these presentations, a brief report on the Global Forum was made by Mr Tadesse. The main outcome of the Global Forum was hearing the collective voice of the people and the initiation of a global network among the people’s organisations.

In the session on the history of leprosy, the most impressive presentation concerned the development of the Hansen’s Disease Museum in Japan. It was initiated by people affected by leprosy and is now sponsored by the Japanese government. It has become a very important base for public education about leprosy and those affected. It could be a good example for other countries. 

Another important presentation, from HANDA China, concerned Hospice care for people living in leprosy villages. It explored the needs and model of hospice care in a special setting of a closed community and showed very positive results of the care carried out by social workers. A member of the audience gave the most remarkable comments – “This is the most useful and valuable presentation I have heard during this Congress. It is an innovative research and gave us new ideas to explore services.” A few delegates expressed their interest to learn and adopt this service in their own country.

Mental health

Without the investigators knowing each other, the methods and tools used in this context were very similar. Often the PHQ-9 had been used as an instrument to measure depression in people with leprosy. The results invariably showed a high prevalence of depression and, where this was also assessed, anxiety or general mental distress. This confirmed the urgent need to address mental wellbeing in leprosy control policies and to test interventions suitable for use at the community level. Where counsellingis available, the results can be very positive, for example for new cases after diagnosis, or for those facing stigma and discrimination.

Laboratory science

There were 25 presentations in Molecular Biology and Genetics, 10 in Immunology & Vaccines and five in Microbiology. Studies aimed at identifying diagnostics for leprosy emphasised point-of-care and field-friendly solutions. Given the nature and endemicity of leprosy, it is important to identify early diagnostic and treatment monitoring solutions that fit into the needs of the resource-limited clinical and diagnostic settings. There are many studies on identifying biomarkers for early diagnosis, nerve function impairment, reactions and response to multidrug therapy (MDT), and a few of them dealt with the translational potential of these innovative solutions in the endemic context. Specifically, there were multiple presentations on host and pathogen transcriptomic signatures and their relevance in understanding either M. leprae pathogenesis or complex host immune responses in leprosy. While most of the presentations in basic science and chemotherapy associated biomarkers to clinical outcomes, there is a definite dearth of translatable and implementable platforms to move these biomarkers from laboratory to clinical practice. 

There were good talks on alternative therapeutic regimens for drug resistant leprosy and even novel therapeutics. A presentation on the laboratory network for strengthening surveillance of drug resistance in leprosy in Brazil conveyed an exemplary surveillance model that can be adopted globally. Another important advance is the identification of a genetic marker for Dapsone Hypersensitivity Syndrome. Presentations on vaccine research provided an overview of the combination of antigens and adjuvants used in the preparation of LepVax, the human T and B cell immune responses, animal model experiments and clinical trials. Expert opinion on a three-pronged strategy that includes MDT, single dose rifampin and immunoprophylaxis added value to the thought process around zero transmission of leprosy. 

Reactions and neuritis

The important complications of reactions and neuritis were covered in several sessions. The need to improve the monitoring of nerve function during MDT was stressed, perhaps with a reduced set of mono-filaments that could be made more widely available. During a plenary talk, Andrew Rice presented current thinking on pain management as applied to leprosy and in particular, around the problem of neuropathic pain, which is being recognised as a common long-term problem in those whohave had leprosy, with a range of possible treatment strategies. Type 2 reactions (also known as ENL) can now be measured more accurately with the ‘ENList Severity Scale’ and the need for thalidomide to be more widely available was raised. A new drug for ENL is being tested at Anandaban Hospital in Nepal, which has exciting potential, while a protocol to test an older, well-established drug, methotrexate, as a steroid-sparing agent in ENL was presented.

Personal stories

“To be able to present my research at the 20th International Leprosy Congress was a great experience for me. I have been working in leprosy for more than 19 years, and this was my first experience to share my skills among individuals, researchers of different countries at an international platform.

This three-day programme of the 20th international Leprosy Congress in Manila helped me in various ways:

  • I was able to  talk about my research with  various delegates, who showed a lot of interest
  • I was able to learn, discuss and share experiences in a variety of fields.
  • I was able to make new friends.

Overall, my journey was very exciting and fruitful as I was able to learn many things. I am confident now to do more research in the coming days.”

“I was very impressed by the participants at the Congress, unusually including patients, carers and doctors as well as scientists.  It was truly one of the most impressive meetings that I have attended and I certainly learnt a lot.  I hope we also contributed a little!”

“I was lucky enough to participate in the 20th International Leprosy Congress with my own research paper and as a co-author of 4 other research papers. I was also happy to assist a colleague with her oral presentation. The three days at the congress were a feast of new ideas, new understandings and new discoveries in the field of leprosy, with the added joy of making new acquaintances amongst the hundreds of delegates every one of whom had an interest in some aspect of the disease – whether from an epidemiological, clinical, immunological, social, psychological, therapeutic or bacteriological angle.” 

“For me personally the most significant message was the ‘New Face of Leprosy’. If only we could provide a new face of leprosy to the general public, the discrimination and stigma could be reduced and barriers to early diagnosis and even prevention could be removed.”

“My experience at Manila has been truly amazing. It was a wonderful event. I enjoyed presenting my poster. There were questions, comments, and interest in what I presented. I enjoyed so much meeting new friends at the venue. The papers presented at the congress were all quite informative and most valuable. All in all, I had a great experience at the congress.” 

Acknowledgements

These comments were compiled and edited by Dr Paul Saunderson. Comments were requested from a variety of delegates, in particular members of the ILEP Technical Commission, whose help is gratefully acknowledged. The Congress statistics were prepared by Ms Florenda Orcullo-Roferos, of the Congress Secretariat and the Cebu Skin Clinic.