The case for governments

By Pradeep Bagival 

World Mental Health Day is on 10 October every year. The day is designed to raise awareness on mental health and directly tackle the stigma that too often faces people and families affected by mental health problems.

Sadly, the mental health of persons affected by leprosy and other Neglected Tropical Diseases (NTDs) has yet to become a priority for governments in NTD endemic countries.  This is something we ought to change right away.

The link between leprosy and mental health problems is significant

Studies have shown that psychiatric disorders amongst patients affected by leprosy are notable and that this is often due to social stigma. It also appears that women affected by leprosy are disproportionately affected by mental health problems because of the social and cultural values, and practices in low- and middle-income countries.

Colleagues in Nepal have written recently about their experience of working with leprosy patients at Anandaban Hospital. Often patients arrive with depression, anxiety, anger, and sleep problems. It’s the job of the team in Nepal to help them to get back on track.

Suicidal thoughts are sadly common

This year the theme of World Mental Health Day was suicide prevention. Across the globe, there is reportedly one suicide case every 40 seconds. This harrowing figure is a reminder to us that suicidal thoughts are particularly common in the leprosy and NTD community.

Last year I was in Ethiopia at the meeting of NGOs that focused on NTDs (NNN). It was an opportunity to hear persons affected by leprosy speak about the suicidal thoughts they had experienced after receiving their diagnosis. It was powerful to hear them talk about this and their words have stayed with me ever since.

Recent research indicates that depression and anxiety, which leads to suicidal tendencies, is common amongst people affected by leprosy. Good mental health is a human right, yet the governments of leprosy priority countries are not doing enough to address this worrying trend and do not provide the services that are needed.

We address this by featuring mental health on the public health agenda

Perhaps the biggest barrier in developing a robust mental health programme in low- and middle-income countries is the fact that mental health is not a prominent issue in the public health agenda.

According to the World Health Organization (WHO), almost a third of countries still do not have a specific budget for mental health. Of the countries that have designated mental health budgets, 21% spend less than 1% of their total health budgets on mental health. This is shocking when you consider that mental health problems affect around 1 in 4 of us.

The success of mental health programmes will depend on the level of political commitment. Parliaments in developing countries have a crucial role to play to ensure that there are adequate resources allocated. We need far more money directed towards mental health than is currently the case. However, they shouldn’t do this alone – partnership will bring success.

The role of the WHO and where they should direct their attention

The WHO is uniquely well placed to advocate, negotiate, and technically support national governments as they develop robust mental health interventions. Their sizeable expertise will allow governments to develop effective mental health programmes, rather than having each country reinvent the wheel.

I encourage WHO country offices in low- and middle-income countries to support governments with this task and, in doing so, address the mental health needs of people affected by leprosy and other NTDs.

There are more than one billion people affected by NTDs in the world – that’s roughly 1 in 8 people who are most likely living in poverty and are facing some of the most horrible diseases on the planet. We must acknowledge that there will be significant mental health problems amongst this population of vulnerable people.

We can do better

In the last few years, mental health problems have raced up the agenda in some countries and we are developing more and better ways of supporting people who face mental health problems. By sharing knowledge through the WHO and by supporting developing countries, we can make this revolution in mental health support truly global.

In doing so we have a much better chance of securing fullness of life for people affected by leprosy and other NTDs.

Reposted with permission from The Leprosy Mission International – originally published in October 2019 here.

Ensuring Expert Care Reaches the Marginalised

Ten-year-old Hannah lives in a small village in Liberia, surrounded by lush, green vegetation. It’s a remote place; after driving two hours on brown dirt, Hannah’s family can arrive at the closest main road.

One day, when Hannah was running to call everyone in for dinner, she felt a sudden pain in her knee. The next day a bump appeared on her lower left leg, and then it burst into an ulcer. Hannah’s parents spent a large sum on local remedies, but she didn’t improve. She was in pain and her parents were desperate, so Hannah and her mother travelled hours to the nearest clinic.

When they arrived, the nurse realised right away that Hannah had a severe case of Buruli ulcer.

“She couldn’t walk – her mother carried her around on her back and Hannah’s leg was bigger than my thigh! We sent for the Buruli ulcer officer right away. He brought the antibiotics personally and immediately because we could see it was so urgent. Hannah was on the verge of death.”

People like Hannah are the reason American Leprosy Missions launched the AIM (Accelerating Integrated Management) Initiative. AIM is pioneering a method to map people with Buruli ulcer, leprosy and other neglected tropical diseases (NTDs) that cause disabilities. These maps show where affected, marginalised people are located and where cases of different diseases overlap, making it easier to target treatment. With this knowledge, a government can mobilise personnel and resources to improve access to care and prevent further disability.

The AIM Initiative equips and empowers governments to provide better care, faster, by:

• Mapping: creating maps that show where suffering, neglected people are located;
• Planning: helping governments develop strategic, long-term plans to target NTDs; and
• Implementing: supporting implementation of those plans by providing health worker training and education, equipping medical professionals to diagnose diseases, and supplying drugs and medical supplies.

The AIM Initiative works to ensure that children like Hannah are diagnosed and treated more quickly, receiving expert care no matter where they live. Through programmes like AIM, we move closer to a world without leprosy and other devastating diseases!

Reposted with permission from The American Leprosy Missions – originally published in October 2019 here.

Special Rapporteur seeks input

Alice Cruz, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, will focus her next thematic report on the policy model to eliminate discrimination against person affected by leprosy and their family members. This report is expected to be presented at the 44th session of the Human Rights Council in June 2020.

She is seeking the views and inputs of members and observer States, national human rights institutions, United Nations agencies, international and regional organisations, civil society and other relevant stakeholders. She has asked that you fill out the questionnaire by 30 November 2019 and email it to srleprosy@ohchr.org, using the email subject: “Submissions to the Questionnaire.” Where possible please limit the response to the questionnaire to 1500 words. Supporting documents can be attached. Should you need any further information or clarification, please do not hesitate to contact her office by email.

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 20^th 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.

Preparing Mozambique and Nigeria for PEP

NLR is delighted to announce that it received funding to start PEP (post-exposure prophylaxis) projects in Mozambique and Nigeria.

Currently, there are only three African governments that have some experience with the PEP approach: Morocco, Tanzania, and the Comoros. Other endemic countries such as Mozambique and Nigeria have not yet started.

Mozambique and Nigeria are two of the most endemic countries in Africa and are included in the WHO priority countries for leprosy.

According to the WHO 2018 leprosy update, Mozambique and Nigeria had 2,422 and 2,095 newly detected leprosy patients respectively, thereby accounting for over twenty percent of the total new leprosy patients in Africa. In Mozambique, leprosy was declared to no longer be a public health problem in 2008 and yet there is a rise in the number of new patients. In Nigeria, the focus of both the government and the international community has switched to diseases like tuberculosis, taking funding and political interest away from leprosy, causing a stall in its detection and treatment.

For these reasons, the projects will incorporate interventions such as active leprosy case finding, mapping of leprosy patients to identify patient clusters for targeted interventions, distributing single-dose rifampicin (SDR-PEP) to more than 30,000 contacts of leprosy patients, and strengthening of the national leprosy control programmes through capacity building of nearly 2,000 health workers in both countries. The project will start in January 2020 and last a total of three years.

At the end of project, it is expected that both countries will have the following outcomes:

• The Ministries of Health will have formally included SDR-PEP in the national strategies on leprosy;
• The project intervention areas in the countries will have fully functioning leprosy control programmes, including SDR-PEP administration, with adequately trained staff, resources, and ongoing leprosy related activities; and
• Self-care will be an integrated part of leprosy related interventions in both Mozambique and Nigeria.

The Bologna Declaration

The Association for the Advancement of Assistive Technology in Europe has published a declaration calling for access to assistive technology to be improved as a way of realising the human rights of disabled people.

According to AAATE, people are made more disabled through inaccessible environments, products or services and/or they lack access to appropriate assistive technology. But there is technology available to support the equal opportunities and full participation for everyone in all aspects of their lives.

This declaration is asking that everyone with influence on policy and practice relating to assistive technology provision, take measures to improve access to high quality assistive technology solutions, for anyone who might benefit from them, everywhere in the world and irrespective of age, gender, ethnicity, sexual orientation, or cause of disability.

The World Health Organization (WHO) has said that more than 1 billion people worldwide need one or more assistive products. By 2030 more than two billion people will need at least one assistive product, with many older people needing two or more. Today, only one in 10 people in need have access to assistive products, which include hearing aids, wheelchairs, communication aids, glasses, prostheses, pill organisers and memory aids.

The causes of the discrepancy between need for and access to appropriate assistive products include: a lack of sufficient information; of necessary skills; of resources; of well-developed health; social care or educational service delivery systems; of political priority; and of attention to fundamental human rights. These are not just problems in low- and middle-income countries, they are global challenges that require action everywhere.

What can you do? Endorse the declaration, which is open until December 2019, or learn more about how assistive technologies can increase the health, wellbeing and socioeconomic stability of everyone.

ILEP’s meeting with Novartis

This month the ILEP President (Jan van Berkel) and CEO (Geoff Warne) had a day in Basel, meeting some of the Novartis team most involved in leprosy.

We saw in person how a commitment to leprosy flows from the most senior levels in the company. An earlier Update explained that Novartis’ ‘home’ for leprosy has shifted from the Novartis Foundation to the Social Business section of the company. This converts into greater bandwidth for leprosy. Mark Alexander Rogers, Novartis’ new lead person on leprosy, is able to draw on expertise from different sections of the company. Examples include:

• development of digital learning materials in leprosy, targeted initially at physicians;
• new focus on monitoring gaps or shortages in MDT drug delivery;
• co-leadership in the new GPZL workgroup on diagnostic tools; and
• ongoing monitoring of the effect of the LPEP programme on new case numbers.

It was positive to see that Novartis’ commitment to leprosy continues to grow and that the leprosy world will be seeing people with a greater diversity of skill focussing on the leprosy question.

Fontilles published portal in English

Fontilles recently published the full English version of the Fontilles and leprosy in Spain portal of the Miguel de Cervantes Digital Library.

This new English portal includes the Fontilles Historical Archive and the Digital Library Miguel de Cervantes. They were developed by Fontilles and the University of Alicante in collaboration with the Sasakawa Health Foundation.

The portal has the double goal of protecting Fontilles’ heritage and presenting that legacy to society, as an example and inspiration for the struggle against social exclusion in the 21st century. The portal has historical and scientific value as it showcases more than a hundred years of recovered, digitised and edited exhibitions of journals, works, images, testimonies, and documents. It reflects on all of the social, economic, cultural and religious elements of the history of Spain during this period of time.

These materials are now available to anyone interested in them and, above all, to those who may be interested in the history of Fontilles and leprosy in Spain.

Assistive device expert goes to GReAT

NLR sponsored Hoa Pham, a Vietnamese orthopaedic technologist with extensive experience, to participate and contribute to the GReAT Consultation 2019 in Geneva.

The Global Report on effective access to Assistive Technology (GReAT) Consultation 2019 was held in Geneva on 22 and 23 August 2019 and brought academics, practitioners, policy makers, and assistive technology users together to guide the content development of the Global Report. There were 260 participants with diverse backgrounds including users, researchers, practitioners, innovators and educators from the global assistive technology community.

She concluded that: “the GReAT consultation covered a very wide range of issues. The discussions in plenary sessions or in the different working groups were an opportunity for the participants to express their views around the themes chosen for the discussions, building on the numerous reports and assessments that had been carried out previously in the frame of this consultation or before. This type of consultation is very important to give more emphasis on assistive technology and to raise its status as an important area of health. The conference built on studies originating from many countries. Although I specialise in technology and there was not much technical contribution, this conference was a great opportunity to improve my understanding about assistive technology and products which are very broad terms.”

NLR’s work on assistive technology

‘These shoes are made for walking’, an NLR and Liliane Foundation project, helps to train more orthopaedic shoemakers in Southeast Asia.

Hoa Pham, a Vietnamese orthopaedic technologist, helped to train students from various Southeast Asian countries to become orthopaedic shoemakers. After their graduation, the students started working in their own countries. NLR and the Liliane Foundation used their existing network to get them started. By working together with existing orthopaedic and rehabilitation centres in Vietnam, Indonesia, Myanmar, Laos and Cambodia, they will start building a network of orthopaedic shoemakers throughout Southeast Asia.

The aim was to make orthopaedics accessible for people who need them. Especially children with spasticity, clubfeet or polio and people who are affected by leprosy, lymphatic filariasis or diabetes.

Political declaration on Universal Health Coverage

The first high-level meeting on Universal Health Coverage (UHC) was held in New York under the theme, “Universal Health Coverage: Moving Together to Build a Healthier World” in late September.

The meeting was looking to move progress forward on UHC and addressed financial risk protection, access to quality essential healthcare services, and safe, effective, quality and affordable medicines and vaccines for all. It concluded with the adoption of a declaration.

The political declaration sets out a high-level framework for the development and implementation of national UHC plans with the engagement of civil society organisations and other stakeholders.

The declaration strengthens movement on SDG target 3.8 on universal health coverage and the WHO’s ‘triple billion goals’, which include extending UHC to one billion more people by 2023. Though Member States welcomed the declaration, they did express concerns regarding the health impacts of climate change, health coverage for migrants and refugees, and language around sexual and reproductive health and rights.

The WHO said that the declaration was the world’s most comprehensive set of health commitments to be adopted at this level.