Open Letter to President Emmanuel Macron

Open letter to President Macron of France, organised by an informal, global network of people affected by leprosy.

Dear Mr. President,

As women and men who have experienced Hansen’s disease, more commonly known as leprosy, we were disheartened to read international media reports earlier this month that quote you as calling on Europe to fight nationalist ¨leprosy¨[1]. Other national and international leaders have used similar language in high profile speeches over the past few months.

While it might be good at grabbing headlines, the use of ‘leprosy’ as a negative metaphor has consequences far beyond the political realm, because it perpetuates old and outdated stereotypes and reinforces stigma and discrimination against us, people affected by leprosy.

Leprosy is not a disease of the past. More than 200,000 people are diagnosed each year with leprosy, and there are believed to be more than two million people affected by leprosy who are undiagnosed and untreated. The negative social attitudes towards people with leprosy create a barrier to treatment, and hinder efforts to stop the transmission of the disease globally.

Leprosy is a curable disease. However, women and men affected by this disease are still marginalized and excluded in many places around the globe. We ourselves have experienced being isolated by family and friends, fired from jobs, discriminated and insulted by people and many other violations of our human rights. That’s why we are working hard every day to change this reality in every community.

Women and men affected by leprosy are people with hopes and dreams like everyone else. Most people affected just dream of a normal life: A place to live and work peacefully, surrounded by their family and friends. They do not want to be defined by their disease.

It is fundamental to ensure that the word leprosy is always used without the burden of stigma. Some countries already took the initiative to change the name of the disease. However, while such change does not take place all over the world, public figures and authorities have the duty to be careful with the thousands of persons affected and the millions that had their lives impacted by this disease worldwide.

We therefore respectfully ask you to not use leprosy as a negative metaphor, and to instead support people in France, Europe and around the globe fighting to stop discrimination against people affected by leprosy.

We are nevertheless convinced that this form of discrimination against us was not the objective of your statement. Yet that’s the effect it has had on us. Confident in your good will, a few of us would be very happy and honored to meet you and discuss more

In the name of women, children and men affected by leprosy around the globe,

Organizations and groups of people affected by leprosy:

HANDA (China)

IDEA Nepal

PERMATA (Indonesia)

Sam Utthan Apal Bihar (India)

FELEHANSEN (Colombia)

HEAL Disability Initiative (Nigeria)

IDEA Ghana

Morhan (Brasil)

Purple Hope initiative (Nigeria)

IDEA Nigeria

ENAPAL (Ethiopia)

APAL (India)

Comunidad de Apoyo (Paraguay)

ILEP Panel of Women and Men affected by Leprosy

Global Leprosy Champions

IDEA INTERNATIONAL

Women and men affected by leprosy:

Evelyne Leandro

Lilibeth Nwakaego Evarestus

Rachna Kumari

Jayashree P Kunju

L H Subodha Galahitiyawa

Amar Timalsina

José Ramirez

Mathias Duck

Mohan Arikonda

Ganesh Muthusamy

Sathya Arikonda

Linda Lehman

Braj Kishor Prasad

Sanjay Kumar

Anand Raj

Lucrecia Vazquez

Mainas Ayuba

Kofi Nyarko

Paula Brandao

Suresh Dhongde

Yurani Granada Lopez

Sofia Castañeda

Isaias Dussan

Felicita Bogado

Jimoh Hammed

[1] https://www.theguardian.com/world/2018/nov/17/emmanuel-macron-ploughs-lonely-furrow-nationalism-authoritarian-regimes; https://www.nbcnews.com/news/world/macron-warns-nationalist-leprosy-threatens-europe-n931211; https://www.nytimes.com/2018/11/08/world/europe/macron-nationalism-populism-wwi-armistice.html; https://www.thelocal.fr/20181101/frances-macron-warns-europe-of-a-return-to-1930s.

« Flower power » : s’armer de roses contre la stigmatisation

Le docteur Sushil Koirala lutte en faveur des droits humains et de la paix depuis plus de 15 ans. Surnommé « The Rose Doctor », il a fondé la campagne « The Rose Movement », dont l’objectif est d’apporter la paix et le bonheur aux autres.  Un mouvement devenu révolutionnaire dans la lutte contre la stigmatisation. Nous l’avons contacté pour mieux comprendre.

Le docteur Koirala est entré en contact pour la première fois avec la communauté de personnes atteintes de la lèpre alors qu’il rejoignait un centre de prise en charge de la tuberculose et de la lèpre dirigée par une ONG népalaise locale. Au cours de ses rencontres avec les personnes atteintes, il a été exposé à leurs difficultés. Il a alors développé sa célèbre campagne « The Rose Movement ». Le principe ? S’échanger des fleurs comme symbole d’acceptation, de solidarité et de paix.

Pourquoi avoir choisi les roses ? Pour le docteur Koirala, elles représentent notre diversité, notre unité en tant qu’êtres humains. « Peu importe sa couleur, une rose reste une rose. Peu importe notre culture, notre langue, notre couleur de peau, notre appartenance ethnique ou notre religion, nous sommes des êtres humains », explique-t-il. Autre chose : les roses symbolisent pour lui aussi l’épanouissement des enfants. Il veut créer un environnement où les enfants peuvent s’épanouir pleinement, comme les roses en période de floraison. C’est comme cela qu’il compte rendre le monde meilleur.

Ce mouvement est maintenant bien plus qu’un mouvement de paix. Le docteur Koirala a commencé à distribuer des roses à ses patients. Parmi eux, des personnes affectées par la lèpre. Il voyait la stigmatisation et la discrimination les affecter, qu’elles viennent d’elles-mêmes ou des autres. Il voulait un moyen de leur montrer que la société les aimait et les acceptait.

« Pour guérir, le traitement seul ne suffisait pas. »

Le docteur Koirala a rapidement remarqué que la stigmatisation s’étendait des communautés de personnes atteintes aux structures de santé, aux hôpitaux, et aux professionnels de la santé. Et que les personnes impliquées dans la lutte contre la lèpre en subissaient aussi la stigmatisation.

Malgré l’existence de programmes de formation, pourtant bien pensés, sur la stigmatisation autour du traitement du VIH, de telles formations n’existaient pas pour la tuberculose multirésistante et la lèpre au Népal. En réponse à cela, il s’est mis à utiliser ses roses pour inspirer les autres et ouvrir le dialogue sur l’exclusion sociale liée à ces maladies. Lui et d’autres travailleurs de la santé ont donc organisé des « Rose Ceremonies ». Ces cérémonies étaient un moyen de soulever la question de la discrimination dans leurs lieux de travail et dans la société.

« Ce que nous voyons de la lèpre… N’est que la partie visible de l’iceberg. Il s’agit simplement de la stigmatisation, de la discrimination et des préjugés à l’égard de différents états de santé, incluant la santé mentale et le handicap. ». Le docteur Koirala espère que la lutte contre la stigmatisation liée à la santé sera bientôt au cœur du programme international en matière des droits humains.

« Tout comme une grande variété d’antibiotiques, j’utilise des roses pour diverses raisons, occasions et événements. L’objectif principal reste le même : promouvoir la paix, l’harmonie, le bonheur, les droits humains, la dignité humaine, la bonne santé. Nous voulons faire ressortir le meilleur des gens, réduire ou mettre fin à la stigmatisation et la discrimination.  Mais nous acceptons aussi le fait que nous sommes une seule famille humaine. »

Le docteur Koirala est actuellement le représentant d’Action Damien au Népal.

Flower Power: How roses have become a powerful weapon in the battle against stigma

Dr. Sushil Koirala ’The Rose Doctor’ has been a human rights and peace activist for over 15 years, and is the founder of the Rose Movement, a campaign to help bring peace and joy to others. We reached out to him to hear how his movement has become revolutionary in the fight against stigma as well.

Dr. Sushil Koirala first became involved with the leprosy community when he joined a TB and Leprosy Referral Centre run by a local NGO in his home country of Nepal. As he met more patients and was exposed to the difficulties they were facing, Dr. Koirala decided to expand on his famed Rose Movement by promoting the exchange of flowers as a symbol of acceptance and solidarity as well as peace.

Why roses? Dr. Koirala believes they best represent our diversity, yet our oneness, as human beings. ‘While Roses may be of different colours, a Rose is still a Rose…no matter what culture, language, colour, ethnicity, or religion we may come from or represent, we are all human’. Dr. Koirala sees roses in bloom as another symbol, for children growing to their full potential; he wishes to create an environment where they can grow to their full bloom, as he believes this is the best way in which to make the world a better place.

What once was a movement for peace soon grew into something much more. Dr. Koirala began to hand out roses to his patients, including those with leprosy. He could see the stigma and discrimination that they faced, from themselves and others; he wanted a way to show them that they were cared for and accepted in society.

‘They need to be healed; treatment alone was not enough.’

Something that Dr. Koirala soon noticed was that the stigma expanded beyond communities; into healthcare organizations, hospitals, and healthcare providers as well. He even noticed that those who were willing to help leprosy communities were associated with this stigma as well. Despite the well-thought training programs on stigma in HIV treatment, there were no such trainings on Multi-Drug-Resistant TB, or leprosy in Nepal. In response, he began to use his roses as a tool to inspire others and begin the conversation about the social exclusion associated with these diseases. In Nepal, Dr. Sushil along with other healthcare workers have organized Rose Ceremonies as a way to raise the issue of discrimination and stigma in their own workplaces and society.

‘What we see … in leprosy is only the tip of the iceberg, this is just the manifestation of a large scale of stigma, discrimination and prejudice against various diseases, including mental health, disabilities and so on’, says Dr. Koirala, who hopes that tackling health-related stigma will soon be central to the International Human Rights agenda.

‘Just like broad spectrum antibiotics, I use roses for multi-purpose at various occasions and events. The key objective is the same: promoting peace, harmony, happiness, human rights, human dignity, good health, bringing out the best in people, reducing or ending stigma and discrimination. But we are also accepting the fact that we are all one human family.’

Dr. Koirala currently serves as a country representative for Nepal for the Damien Foundation.

Talking leprosy: Irene Allen

Irene Allen joined Lepra in 1981 as the Director’s Secretary, and then became Research and Projects Officer, Information Officer, and finally Assistant Editor to Leprosy Review. She is also Lepra’s archivist and historian. Irene will be retiring at the end of November, so we asked for her reflections on her time with Lepra and work with the leprosy community.

My inspiration for working in leprosy was a young woman I met in India, whose husband had thrown her out and children were taken away from her because of her leprosy. She had just undergone corrective surgery to straighten her clawed fingers and looked so sad that I put my arm around her. When she gave a sharp intake of breath, I asked our doctor to apologise if I had offended her. He said it was just that people don’t hug those with leprosy. That brought a lump to my throat, and is why I have stayed in leprosy all these years.

The history of our overseas workers has always fascinated me, as they went out to fight a disease that was still quite unfamiliar. Their courage and fortitude has always motivated me to ensure their story was told.

Stigma is an enduring yet urgent challenge for us all to tackle, but ignorance and fear of the disease makes this very difficult. A medical approach alone is not enough; people need to be treated holistically in order to restore their dignity and self-esteem. We need a concerted effort to educate the general public that leprosy is a totally curable disease and need not lead to deformities if treated early enough.

Through Leprosy Review I have met some wonderful authors and reviewers. I’ve also had the privilege of working with four excellent Editors and an incredible team on the Editorial Board. We have always fought to enable the journal to be sent out free of charge where it is most needed, and for those who do pay for it, the price has not increased for years.

Leprosy Review owes a debt of gratitude to ILEP members who have always supported the publication of Leprosy Review. With your help, we will beat leprosy.

Photos clockwise from upper left: Irene with some of the letters from children during the 1996 ‘Blue Peter Appeal’, a visit to Sonepur and the Lepra BOLEP project, Lepra Review, and another photo from the trip to Sonepur

Talking leprosy: Rachna Kumari

Rachna Kumari spoke to ILEP’s Rosa Argent at the NNN 2018 conference in Addis Ababa at the end of September. Rachna is a Community Mobiliser in a LEPRA Society’s leprosy referral centre in Munger, Bihar State of India, and is a member of the ILEP panel of men and women affected by leprosy.

“My name is Rachna Kumari and I am affected with leprosy. I was 24 when I became aware that I had leprosy. My journey to recovery was a long one filled with wrong diagnosis…”

With these words, Rachna Kumari started her address to the 400 delegates attending the opening session of the Neglected Topical Diseases NGO Network (NNN) in Addis Ababa, Ethiopia.

She delivered a powerful personal testimony that made the case for the genuine participation of persons affected by neglected tropical diseases. Many of the obstacles she faced – including economic hardship and social stigma – are common barriers that exclude many people living with NTDs, including leprosy, in poor and marginalized communities around the world from participating equally in society.

Calling for “governments, NGOs and the WHO to work for policy changes that involve us persons affected by leprosy and other NTDs”, she tells me later, was a proud moment in her life. “I was sharing my voice on this international platform. I was representing all people affected.”

Rachna says she reflects often on how her life has changed. She was working different casual jobs in factories in New Delhi and “not looking after myself well” when she first noticed the symptoms of leprosy. She was struggling to do up buttons on clothes or brush her hair due to numbness in her fingers. Eventually the pain in her hands, arms and feet, coupled with a terrible fever, drove her to seek medical help. A doctor failed to detect leprosy and sent her away with drugs that did not work. Days later, and in severe pain, she sought help at the All India Institute of Medical Sciences, where she finally received her diagnosis. After receiving treatment and being discharged, she returned home to Bihar to start her 12 month course of Multi Drug Therapy.

At this point in her life, her son was 3.5 years old and her daughter was just 2 years old. Rachna describes the personal pain she experienced dealing not only with the knowledge of “this bacteria inside me” but the sudden death of her supportive husband too. “I struggled with this disease and I struggled in all aspects of my life. My mind had changed and my husband had gone.”

Forced to raise her children alone, she worried about passing leprosy onto them. Despite taking MDT, for four long years she was careful not to eat or sleep with her son or daughter.

“Due to personal tragedies also occurring (at the same time as) leprosy I suffered the worst moments of my life. Hence I feel early detection is very important. It was thanks to the NGO Lepra that I received proper treatment and began to recover. This visit changed my life completely,” says Rachna.

Now working for Lepra, Rachna’s day job at the Munger referral centre allows her to help other women with leprosy access treatment and care, as well providing vital social services. She works with the community to teach self-care techniques and counselling. Focus group discussions are run for men and women, both collectively and separately, and Rachna draws on her own past to help others open up about their own concerns or difficulties, which can be physical or psychological.

“Since I have experienced the pain and effects of being affected by leprosy, like difficulties in getting correct treatment, facing stigma, it is easier to understand the thinking and emotional disturbances of these people,” she says.

As a member of the ILEP panel of men and women affected by leprosy, she also spends a considerable amount of time travelling internationally to meetings to “raise awareness and advocate for the rights of the leprosy affected to lead a life of dignity”. She remarried in January 2018 and together the couple have 4 children (3 boys and one girl). Fortunately, her new husband is very supportive and helps look after the children while she is away.

“It seems like I have three lives,” she tells me. “My first life with my husband was very good. The second stage was very bad, and I suffered very much. But now I am in the third stage, my real new life.”

Global leprosy statistics show slight decrease in reported cases

WHO data: 210,671 new leprosy cases reported in 2017

At the end of August, the World Health Organisation published its annual statistics on world leprosy. These provide data about the current state of leprosy from 150 countries – more than ever before.

The data tells us that global leprosy case detection increased slightly in 2017 in all regions other than South East Asia – due probably to more complete reporting.  Worldwide, 210,671 new leprosy cases were reported, down 2% from 2016.

Two of the key targets in WHO’s global leprosy strategy relate to the number of patients with Grade 2 Disability (G2D) at the time of diagnosis. A reduction in G2D can show the effect of interventions to find cases early. One of these targets is to have zero new child cases with G2D. A total of 238 child cases were reported, but this seems to be under-reported as data is lacking from some countries. The other target is to reduce the G2D rate in new cases to below 1 case per million population. This figure went down from 2.5 per million in 2015 to 1.8 in 2016 and 1.6 in 2017, having previously been very static at around 2.5 per million. It is difficult to call this a significant trend yet – almost all the reduction occurred in India and Indonesia – but we will watch with interest.

Reports of routine testing for drug resistance were presented for the first time: 1,058 patients were tested and there were 18 cases of rifampicin resistance. Leprosy reactions were also reported for the first time: 7,332 cases of Type 1 reactions and 5,370 Type 2 reactions. The only further detail given is the regional breakdown of cases. The regional breakdown suggests that there may be both under-diagnosis and under-reporting of reactions, especially in Africa.

The existence of discriminatory laws and instances of discriminatory practices were also reported for the first time. It is likely that this data is severely under-reported, possibly because systems were not yet in place to collect this sort of information. We hope for more comprehensive data next year.

Talking Leprosy: Christine Fenenga

This month ILEP’s Rosa Argent catches up with Christine Fenenga, the Operational Excellence Working Group Coordinator of the Global Partnership for Zero Leprosy.

Born on a small island in the north of The Netherlands called Schiermonnikoog, Christine left the island to study physiotherapy when she was 16 years old. Curious to explore other parts of the world to meet and learn from other cultures, she travelled and worked for public and private organisations in health services in over 15 countries throughout Europe, Africa and Asia. She filled different positions (i.e. manager, coordinator, policy officer, researcher). In between contracts she studied public health and anthropology. She holds a PhD from the University of Groningen on ‘Clients’ perspectives on health care and health insurance services in Ghana’. During her 25 years of international health she worked in leprosy care in a number of countries in Africa and in Indonesia. She attended training at the Karigiri Leprosy Centre.

RA: Congratulations in your new role as the Operational Excellence working group coordinator for the GPZL. What attracted you to this position? 

CF: The fact that leprosy, as one of the NTDs, affects often the socio-economic disadvantaged people in society and, despite availability of effective treatment, still leads to much physical and mental suffering made me decide to jump at the chance of this new position. I am very excited to get the opportunity to work with you all on this important aim of Zero Leprosy.

RA: What does ‘operational excellence’ mean to you? Why is it important to the overall success of the partnership?

CF: Operational Excellence for me means working together to find the best approach to achieve the objectives of the Global Partnership for Zero Leprosy (GPZL). It means building on the experience and strengths of people working in leprosy, empowering each of them to be innovative and share best practices (and failed practices), to learn and benefit from this and improve the national programs. I believe that to succeed in this role it will be important to have an open ear and open mind for different views in order to understand and take into account the diversity in perspectives.

RA: What are the key opportunities? And the key challenges?

CF: The timing for this initiative is right: with exciting new developments in the field of prevention and a stronger collaboration between ILEP, the WHO and other NTD programs we can accelerate our efforts to achieve Zero Leprosy. As challenges, I see the monitoring of clear program outcomes in order to demonstrate the value of our work. Not only for showing to the people affected by leprosy or for ourselves as managers; we need these results for continuous advocacy and fundraising to complete the job of the Global Partnership for Zero Leprosy. Another important challenge may be maintaining sufficient human resource capacity, and attracting motivated young health workers with leprosy knowledge and skills. We must address the issue of how we can maintain a level of expertise.

RA: Who do you plan to engage or work closely with to help develop the operational excellence roadmap?

CF: The Operational Excellence working group will soon be established. We are looking for enthusiastic people, innovative and practical thinkers, particularly people with hands-on experience from the national programs, who are familiar with the innovations and challenges in their country. Of course, people affected by leprosy should also be on board. We will work together with the WHO, NTD programs and with the other working groups under the GPZL.

RA: Do you have a message for ILEP members?

CF: I think there is a huge opportunity for ILEP members to participate and contribute actively in the GPZL. Although each organisation may have its own background and way of working, I encourage you to bring one of your champion-projects as best practice or best strategy to the table. As key collaborators and technical experts you can contribute to help strengthen the health system in battling this neglected disease. I am looking forward working with you.

Talking leprosy: Anna Wickenden

This month we catch up with Anna Wickenden, the Director of the AIM Initiative, and hear her views on how the leprosy community can demonstrate leadership in the broader fight against NTDs.

Born in London, U.K., Anna Wickenden’s commitment to combatting Neglected Tropical Diseases (NTDs) has seen her spend a decade living in Canada before moving to west Africa last year, where she oversees the AIM Initiative.

Coming from a disability sector background, Anna moved to Canada in 2007 to work for Effect: Hope (then The Leprosy Mission Canada), before her appointment as AIM Director two years ago, and the subsequent move to Ghana with her husband.

The AIM Initiative aims to break down the barriers to NTD care through using innovative mapping techniques and integrated health system based interventions that help guide governments and partners to design health care programmes that target the areas of greatest need and highest risk. The very fact that these diseases are neglected is personally motivating to Anna, who says the role appealed to her because it provides a real ‘opportunity to make a difference and address a gap in the link between data and data driven programming’.

The AIM Initiative is currently supporting mapping in 7 countries, although Anna is currently spending a lot of time in Liberia – a country where the 3 pillars of the initiative (mapping, national plans for case management and an integrated response) are being implemented in partnership with the Ministry of Health. The work can be challenging and stressful at times, she says, with obstacles such as “poor infrastructure, seasonality, governance and a health system still rebuilding after the war and Ebola” to contend with, but it can also serve as a model for what is possible to achieve with integration, government ownership and collaboration and responsive data driven support from partners.

Several ILEP members have been champions of the AIM Initiative, including Sasakawa Memorial Health Foundation, American Leprosy Missions and Effect:Hope, and Anna believes the leprosy sector can add considerable value to the broader fight against NTDs.

“Of all the NTDs, leprosy is the most advanced in terms of case management”, she says. “Morbidity management for leprosy is the best supported, has the most data and has the broadest expertise, compared to other diseases such as Buruli Ulcer and LF. The leprosy community could be a huge point of leverage of knowledge and reach for other NTDs; this could be a game-changer for other diseases and also benefit the leprosy community as it continues to demonstrate its relevance and importance in serving the needs of some of the world’s most neglected and vulnerable populations.”

Collaboration is clearly fundamental to Wickenden’s approach, and she is a member of the ILEP Institutional Fundraising network that was established towards the end of 2017. She believes the network has the potential to overcome ‘deeply ingrained’ organisational silos, and that it can serve as a platform for building trust, which is already ongoing in some areas.  She points to the success of other disease partnerships, such as ICTC, which used collaboration amongst stakeholders to demonstrate not only the tools for combatting trachoma, but also obtaining high-level political and financial commitment for action.

And she believes that the leprosy community and ILEP members are well positioned to lead the way in NTD control, case management and universal health coverage for NTDs. “I think there is a huge opportunity to collectively position ourselves as key collaborators and technical experts in areas that are traditionally neglected in NTDs, from early case detection and treatment, to stigma and inclusion. There is huge potential value in using this expertise to help strengthen health systems in endemic countries.”

ILEP appoints Geoff Warne as new CEO

On behalf of the ILEP Board, Jan van Berkel, ILEP President, has announced the appointment of Geoff Warne as Chief Executive Officer for the federation.

“I am delighted to announce that Geoff Warne, who is well known to many of us within ILEP and the wider leprosy community, will be taking up this important position,” says van Berkel.

“It is great to have Geoff back in ILEP in this crucial year for the international leprosy community, in which the Global Partnership for Zero Leprosy will deliver its Research Agenda and Roadmap to Operational Excellence. ILEP has the ambition and expertise to contribute as a key player in both exercises.

“The ILEP Board is looking forward to benefiting from Geoff’s impressive experience and track record as an NGO leader in the leprosy field.”

Geoff Warne was General Director of The Leprosy Mission International, an ILEP member, for ten years. He has extensive experience in leadership and senior management in health and disability NGOs, as well as within federated organisations, and has 17 years’ senior experience in the leprosy world. For the past two years, he has been working as a consultant in his native New Zealand.

Warne says: “It’s an exciting and dynamic time to be coming back into the leprosy world and especially into ILEP. The contribution of ILEP and its members to the goal of zero leprosy has been immense and I am inspired by the way it has grown in stature and capability in recent years. It’s a real privilege to come into a leadership role with this team.”

Warne will be joining the ILEP secretariat team in Geneva, Switzerland from mid-August, taking over the CEO role from Tanya Wood.

ILEP is a federation of 13 international non-governmental organisations united to create a world free from leprosy. Members work in 66 countries on 700 projects. ILEP supports a technical commission of world experts on leprosy, and has an advisory panel of persons affected by leprosy. ILEP was a founding member of the Global Partnership for Zero Leprosy – a new partnership launched in January 2018 to align the leprosy community and to accelerate effective collaboration towards the goal of zero leprosy.

Leaving no one behind through full implementation of the CRPD – Blog post

The Leprosy Mission sent a delegation to the 11^th conference of the state parties to the UN Convention on the Rights of Persons with Disabilities, held on 12-14 June in New York at UN HQ.

Here Pradeep Bagival, Head of Advocacy at The Leprosy Mission, shares his reflections on the conference. 

The UN CRPD entered its 10^th year since coming into force in 2008.  The conference witnessed participation from 177 countries that have ratified the convention which included 21 leprosy endemic countries. The participants included senior officials of the national governments, officials of the UN agencies, members of National Human Rights Institutions (NHRIs) NGOs, DPOs and individuals involved in promoting and protecting the rights of persons with disabilities.

Participation in the 11^thCoSP was of special significance to TLM and to persons affected by leprosy for the following reasons:

• The theme of the conference was ‘leaving no one behind through full implementation of the CRPD’. The CoSP became a platform for TLM to echo the voice of persons with leprosy related disabilities who are significant in number and have been hitherto excluded from the mainstream disability rights movement. For the first time in the history of CRPD, the issues concerning stigma and discrimination faced by persons with leprosy related disabilities were heard and made known to all the disability stakeholders attending the CoSP.
• The global conference provided an opportunity for TLM to appeal to 21 leprosy burdened countries who have ratified the CRPD to eliminate discrimination against persons affected by leprosy by implementing the Principles and Guidelines adopted by the UN General Assembly.

TLM also contributed to the Civil Society Forum – one of 6 civil society organisations to make a statement – emphasizing the need for engaging CSOs in the monitoring of the CRPD.

The Leprosy Mission was one of the select NGOs to speak during the Round Table discussions. Brent Morgan, The Leprosy Mission’s International Director, was one of the speakers who strongly articulated for the realization of the rights to political participation and equal recognition before the law for all persons with disabilities and specifically highlighted the denial of these critical rights in the case of persons with leprosy related disabilities.  He emphasized that  persons with leprosy related disabilities are perhaps the only group amongst people with disabilities who face ‘legal discrimination’on account of discriminatory legislations that are still force in many countries, denying them the right to political participation and equal recognition before the law.

A side event was organized by the Leprosy Mission along with the Disabled People’s International (DPI), a global cross- disability organization having its presence in 130 countries, and the Nippon Foundation, a social innovation hub supporting persons affected leprosy through provision of grants to NGOs on using ‘CRPD as a normative framework to end stigma and discrimination against persons with leprosy related disabilities.’

Amar Timalsina was one of the speakers who represented persons affected and shared his personal experiences of being subjected to the prevailing stigma and discrimination against persons affected by leprosy. Mr. Mohammad Lofty, represented DPI and highlighted some of the collaborative efforts of the DPI in including persons affected by leprosy within the DPO network globally.  Pradeep Bagival spoke about the barriers persons with leprosy related disabilities encounter in realizing some of the critical rights guaranteed under the CRPD. The panel discussion was moderated by Brent Morgan.

Click here to download and read the full report

Abolishing discriminatory laws is a fundamental human rights issue – ILEP

ILEP oral submission to the 38^th Session of the Human Rights Council

Statement from Mathias Duck, Chair of the ILEP Panel of Men and Women Affected by Leprosy

ILEP, the International Federation of Anti Leprosy Associations – a network of NGOs working in 63 countries to achieve zero leprosy – wishes to congratulate Alice Cruz, UN Special Rapporteur for the Elimination of Discrimination for Persons Affected by Leprosy and their Families, on her impressive report. It reminds us of the huge necessity of this important mandate, which unless addressed, means we will not reach our collective goal to leave no one behind.

I am here today as chair of ILEP’s Panel of Men and Women Affected by Leprosy – and as someone who has experienced this disease first-hand. It is an honour to be here; empowerment and participation of persons affected by leprosy is a key aspect that needs to be promoted and practiced by all of us intent on getting rid of this disease.

ILEP has a strong commitment to achieving Zero Discrimination against people affected by leprosy. Our work includes promoting the voice of people affected by leprosy; strengthening social inclusion; better understanding how discrimination affects women and girls; conducting research into the types of stigma people experience; and identifying the discriminatory laws that still exist in many countries. 

We endorse the Special Rapporteur’s recommendations on greater inclusion of people affected by leprosy in the decision-making process and the need to achieve zero discriminatory lawsand practices. Clearly, we cannot hope to increase participation of persons affected if statutes remain in many countries that legally discriminate against people because of leprosy – a disease and not a crime.

ILEP has recently updated our research into discriminatory laws around the world, whichcan be found on the ILEP website. It reveals 185 discriminatory laws in 44 countries: 156 are active or of unknown status, 19 repealed, 5 under review and 5 amended. These are laws designed to segregate or separate, affecting many areas of people’s lives including where people work, how they travel and who they marry. 

Abolishing these discriminatory laws is a fundamental human rights issue and we call on the States present here today to help by ensuring that any active laws under your jurisdiction are abolished. This would only be the first step. The second would be to tackle discriminatory practices and promote legislation that ensures a life of dignity for people affected by leprosy.

Together, we can achieve our collective commitment to UN Resolution “Eliminating Discrimination of People Affected by Leprosy and their Family Members” by increasing meaningful participation of persons affected by leprosy – people like me – and by committing to Zero Discriminatory laws. Thank you. 

Talking Leprosy: Alex Jaucot

This month, we talk to the CEO of the Damien Foundation and ILEP country coordination champion, Alex Jaucot, to find out why he is passionate about working together and his thoughts on the future of ILEP.

Alex Jaucot knows firsthand the challenges and opportunities of country coordination in delivering health care programmes to hard to reach communities. Prior to becoming head of the Damien Foundation in 2015, he spent 20 years with the organisation working as a project manager in Asia (Vietnam, Laos and China) and had 4 years’ previous experience as a technician working in the DR Congo with the Brussels-based foundation.

The Damien Foundation is dynamic and evolving: under Alex’s direction, staff have spent 18 months developing a new 10 year strategic plan to guide the organization until 2028. He sees parallels between this process and discussions about what opportunities lie ahead for ILEP: “I do not have a crystal ball, but I consider the set-up of the Global Partnership for Zero Leprosy as a real opportunity for ILEP. This is a very interesting new mechanism that can have a significant impact in the fight against leprosy: it will give ways never before received for this disease.”

Achieving zero leprosy will require a strategic approach that recognizes the importance of global trends such as shifting power dynamics and investing in people, Alex believes. “There are other opportunities such as mobilizing the civil society, developing talents in developing countries by switching the poles, moving from a north-south approach that is still too often the rule towards a south-south approach, even south-north,” he says.

“To achieve this change, we must invest in a major asset, the human resources, and get universities and research centers in developing countries involved in the process. This goes hand in hand with a sound and innovative program aimed at developing new diagnostic tools, a shorter treatment, an effective vaccine.”

Overcoming the acute loss of medical expertise in the field of leprosy is a key challenge. Alex highlights the fact that “many experienced and motivated health care workers have already retired or will retire soon. The pace of departures is not offset by the arrival of trained personnel. How can we sustain the know-how acquired in the fight against leprosy, attract doctors, nurses or physiotherapists in the fight against a disease that receives less and less attention? It is not for nothing that leprosy is now part of the group of neglected tropical diseases. The fact that leprosy is virtually absent from the agenda of local medical authorities is another challenge.”

Given that there are many other competing medical priorities, even in countries where leprosy is endemic, ILEP members and other actors in the fight against leprosy must work together to ensure the “means necessary to overcome this disease are well mobilized”.

Working together is fundamental to Alex’s approach. He has firsthand experience from working as an ILEP coordinator in Vietnam of the challenges of in-country coordination between different NGOs and other stakeholders such as the WHO. “It was not an easy task just to exchange information (Internet didn’t exist yet at that time), to work together especially when the local authorities tried, especially at the beginning, to play the division card. Fortunately, most members quickly realized their interest in consulting each other, just as the authorities quickly saw the benefit they could gain: better coverage of leprosy services across the country, elimination duplications and gaps, continuous supply of drugs and equipment, etc. Four of the ILEP members have even rented a building together to strengthen their collaboration. Various synergies have been developed and implemented in perfect coordination with the national program. I am particularly pleased with what has been accomplished. Good coordination certainly leads to greater efficiency just as it allows significant leverages.”

Yet it doesn’t always run so smoothly. Alex says: “Today, my job makes me travel to countries where ILEP members are present and unfortunately, I do not always find a frank agreement to allow good coordination… I believe first and foremost that coordination is based on a complete and transparent communication of what everyone does or wants to do, and then relies on what members want to do together to best meet the needs of the program.”

The way forward, he believes, is prioritizing common interest over individual interest, and ensuring that ILEP members’ head offices provide the necessary support for coordination. In his new role as the ILEP Members’ Assembly country coordinator champion, Alex aims to strengthen coordination between ILEP members and with the local partners. “I hope that a new mechanism will be put in place quickly within ILEP to strengthen coordination and to serve as an example of coordination for other NTDs.”

Recognizing that sometimes staff within ILEP member organisations feel frustrated with the process or question the value and effectiveness of country coordination, Alex’s message is don’t get discouraged but rather “examine the causes of failures as sources of lessons to learn” and persevere.

“I wish every success to everyone involved in a coordination. Coordination was one of the pillars of ILEP when it was created. It is still today and it will be even more tomorrow with the Global Partnership for Zero Leprosy.”

ILEP Annual Report 2017

We are proud to share with you the major accomplishments of ILEP in our 2017 Annual Report, as we worked collaboratively towards zero transmission, zero disabilities and zero discrimination. Read the full report here!

Talking Leprosy: Interview with Courtenay Dusenbury

“ILEP will play a crucial role in the success of the global partnership”

This month, ILEP’s Rosa Argent caught up with Courtenay Dusenbury, the Secretariat Director of the Global Partnership for Zero Leprosy, in Colchester to find out what attracted her to the role and how important she believes the role of ILEP members will be in achieving zero leprosy.

Courtenay Dusenbury has a talent for bringing people together from disparate groups towards a common goal. Prior to joining the Global Partnership for Zero Leprosy in January, she was the founding director of the International Association of National Public Health Institutes U.S. office, working with ministries of health and public health leaders in countries to transform national public health capacity globally.

She was inspired to join the leprosy community at this critical juncture – just weeks before the global partnership was publicly announced – because “I was very interested in the idea of helping to create a new partnership of people – with a shared and bold vision and aspirational goals – to tackle a 2000+ year old problem.”

Describing one of her traits as perseverance, Ms Dusenbury – who is perhaps fittingly a marathon runner – highlights the importance of relationship building and long-term commitment required for the partnership to achieve success. She says: “It’s a tremendous honor and learning opportunity to be able to work with the top scientific experts and policymakers on our leadership team as well as the leaders and teams of the ILEP membership. The amount of goodwill and willingness to work together for the benefit of humankind they share is very exciting.

“Such opportunities are rare and I have the sense that everyone understands the importance and gravity of the chance we have been given to work together in 2018 – what it means for 2028, and 2038 … and beyond.   We feel very strongly that we want to get this right, that we recognize there are political, scientific, and programmatic complexities, and that it will be necessary to persevere and to be committed for the long term.”

Despite many complexities, however, she believes that the success of other private-public partnerships in the neglected tropical disease sector demonstrate the huge potential for achieving zero leprosy. “With a common vision and a framework, and objectives for achieving that vision, we can do what other groups in the NTD community have done:  share and apply best practices, technical expertise and lessons learned across countries and communities.  The Global Partnership’s Program Implementation working group (coordinated by ILEP) in particular will help to develop and apply the strategies for programmatic excellence needed to get to zero.”

The importance of partners sharing a common vision, and setting and agreeing clear objectives and milestones, is critical.  Ms Dusenbury believes that “It’s a key role of the partnership to ensure that all those impacted and interested are at the table from the start, that their input is sought and acted upon, that consensus is used to come to decisions on how we proceed.  In other words, true partnership.”

The role of ILEP’s secretariat and its members, she argues, play a unique and important leadership role in the partnership. “Their experience in research and program implementation, the close relationships they have with partners working in country, their funding of best practices and their dedication to improving the lives of our fellow human beings make them absolutely essential to this work.  Their technical and policy expertise is priceless; no global effort can function without it.  Having guidance and advice from ILEP, and full participation in work groups and policy development, will be crucial to the success of the global partnership.”

Global assembly reinvigorates efforts to beat leprosy

Thursday 22^nd March, Colchester – A global assembly, hosted by UK-based specialist leprosy charity, Lepra, brought together delegates from across the world to reinvigorate efforts to beat leprosy[1].

The assembly was held at Lepra’s Head Office in Colchester, Essex on Monday 19^th – Friday 23^rd March. The meetings were chaired by the International Federation of Anti-Leprosy Associations (ILEP)[2] and the Disease Management, Disability and Inclusion (DMDI) working group of the Neglected Tropical Disease NGO Network (NNN)[3]. The leadership team for the Global Partnership for Zero Leprosy[4] also hosted their Inaugural Meeting.

The meetings attracted delegates from America, Geneva, India, Nepal, The Netherlands and Paraguay and were attended by representatives including the World Health Organisation (WHO), United Nations (UN) and Novartis Foundation.

The ILEP Technical Commission meeting discussed how to advance the research which is needed to accelerate efforts to achieve zero leprosy, and practical issues relating to how ILEP can strengthen its monitoring and evaluation. The Panel of Men and Women affected by leprosy discussed the ways to increase meaningful participation for those affected by this disease, including playing a leading role in updating health-related stigma guidelines.

Geoff Prescott, Chief Executive at Lepra said:

“Leprosy is a tragedy, but it needn’t be the case as it’s completely curable[5]. However, a lot still needs to be done to beat this disease. There are more and more cases, but less funds to treat it. That’s why these meetings are important as they enable different organisations from across the world to get together in one central place to discuss future projects and partnerships to accelerate efforts to end leprosy.”

Diana Lockwood, Infectious Disease Physician and Leprologist at London School of Hygiene and Tropical Medicine said:

“One of the biggest challenges with leprosy is that it can often be difficult to detect and treat nerve damage – the hallmark of this disease. By pulling experts together within the leprosy field, today we were able to discuss various research programmes and projects that can be explored to treat this, in addition to other leprosy complications.”

Mathias Duck, Chair of ILEP’s Panel of Women and Men affected by leprosy said:

“I was diagnosed with leprosy in 2010, which affected the nerves, sensitivity and strength in my right hand. I was working at a leprosy reference hospital at the time and I was treated right away and recovered completely. Continuous and increased efforts in leprosy are needed to treat people on time, stop transmission, prevent disabilities and reduce stigma. That’s why the panel is important as it brings people affected by leprosy together to give them a voice which helps to shape policies and projects.”

Ends

[1] According to the World Health Organisation, more than 200,000 new cases of leprosy are detected and diagnosed each year. Survey and research data also shows that more than 7 million people are currently affected by leprosy worldwide. Of these, 4 million have developed life-changing disabilities as a result of delayed treatment while over 3 million cases remain undiagnosed. Reported cases in India are at a 10 year high.

[2] ILEP is a Federation of 13 international non-governmental organisations united to create a world free of leprosy.

[3] The NNN was established in October 2009 to create a global forum for non-governmental organisations working to control onchocerciasis, lymphatic filariasis, schistosomiasis, soil transmitted helminths, and trachoma. Other diseases including leprosy have since joined the forum.

[4] Leprosy groups have joined forces to launch a Global Partnership for Zero Leprosyto accelerate progress towards a world without leprosy.

[5] The cure for leprosy is Multi Drug Therapy which is administered free of cost to leprosy patients in all endemic countries.

Lepra finds 30% more women living with undiagnosed leprosy

Ahead of International Women’s Day, 8^th March, UK-based leprosy charity, Lepra has published new research which found 30% more women living with leprosy in Bihar, India, than the Indian government.

Evidence suggests that gender inequality in leprosy endemic countries is one of the main barriers preventing women accessing treatment. This leaves them at greater risk of developing life-changing disabilities.

Rukmini Rao, Chair of Lepra in India comments:

“In India, there are many cultural barriers which prevent women from accessing healthcare. They often have to wait for permission from their husband or guardian to access medical help and they are unable to be examined by a male doctor alone. Many also fear the consequences of a leprosy diagnosis, which can lead to abandonment, unemployment, loss of their home, or even access to their children.”

There is no evidence to suggest men are more susceptible, however, national data reported in 2017 shows that over 58%[1] of cases that were diagnosed in Bihar were men. The organisation believes more men are found as they do not face gender inequality that prevents them from seeking treatment.

The research, published in December 2017[2], shares the results of enhanced screening surveys conducted across Bihar. The number of cases found in Lepra’s survey suggests as many as 30% of women may be missed in the official government programmes.

The enhanced screening surveys were conducted by predominantly female Community Champions in areas with a high prevalence of leprosy, including tribal and marginalised areas. The charity found that female health workers were able to visit and examine women in their homes, overcoming some barriers preventing access.

Rokdiya, aged 14 from Bihar was found in the enhanced screening survey. She says:

“I developed patches a few years ago, but, I was too scared to seek treatment as I was worried about stigma. I was so afraid because my father lost his right eye to leprosy. I was found through the screening survey, where a Lepra health worker visited my home to check me for symptoms. I am now receiving the cure but I won’t tell anybody that I have been affected by leprosy as I am worried that I will be treated differently.”

Lepra wants to up-scale its enhanced screening surveys to diagnose and treat more women living with leprosy. The organisation is asking the public to hold life-changing tea parties to raise funds to help train more female Community Champions so that more women can be screened for the disease and provided them with the treatment they urgently need.

To find out more visit https://www.lepra.org.uk/life-changing-tea

[1] Data sourced from 2016 – 2017 annual report from the National Leprosy Eradication Programme (NLEP) http://nlep.nic.in/data.html

[2] Research published in Leprosy Review: Enhanced active case-finding, identifying leprosy cases missed by recent detection campaigns in Munger District, Bihar, India https://www.lepra.org.uk/platforms/lepra/files/lr/Dec17/Lep452-462.pdf

Talking Leprosy. Alice Cruz: “A medicalized approach to leprosy is not enough”

This month, we catch up with the newly appointed OHCHR Special Rapporteur for the elimination of discrimination against persons affected by leprosy and their families, Alice Cruz, to find out what motivates her to fight for the rights of affected people and why she believes a medicalized approach to leprosy is not enough.

Alice Cruz has devoted almost all of her professional life working to assist persons affected by leprosy. A Portuguese national, she started her career as a medical anthropologist and now teaches law in Ecuador.

Extensive fieldwork in Portugal, Brazil, South Africa, Bolivia and Ecuador brought her into contact with leprosy organisations. Ms Cruz reflects: “I would say that one of the more critical and enriching experiences I ever had was at the grassroots with MORHAN. There I have learned how persons affected by leprosy brilliantly and resiliently lead their struggle for recognition and dignity.”

This time spent working with individuals affected by leprosy, and seeing the challenges they faced daily, made a lasting impact on Ms Cruz and drives her passion to advocate on behalf of those denied their human rights. “I have come to be deeply engaged at the personal level with persons affected by leprosy, as well as deeply aware of the institutional and social barriers they still face to a full life. I saw this newly created mandate as an historical opportunity for taking the required steps at the level of policy-making for tackling those same barriers.”

Yet she readily acknowledges that overcoming social stigma and structural discrimination for people affected by leprosy is no easy task. “Ending discrimination is a very difficult task in any circumstance and with relation to any oppressed and vulnerable group. But it is also a mandatory one. Especially in the case of leprosy. There are many opportunities and many challenges.

“I would like to highlight the growing awareness amongst stakeholders that a medicalized approach to leprosy is not enough and that leprosy is such a multifaceted phenomenon that an intersectoral approach that works both its medical and social dimensions is required.”

Optimistically, Ms Cruz believes that we are at an important juncture in our fight against this age-old disease. “I would say that we’re witnessing another turning point in the modern history of leprosy now, with the growing consensus that a human rights agenda is critical for tackling leprosy.” She cites as evidence the inclusion of discrimination as an indicator in WHO reports and also the mandate created to move forward the implementation of the UN Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members.

The best way to do this, she believes, is through putting the participation of persons affected – working with civil society, NGOs, specialized agencies, regional human rights mechanisms, national human rights institutions and the overall United Nations system – at the core.

To make an impact requires raising awareness about leprosy and discrimination among governments and policy makers. However, of the many challenges ahead, she believes one of the more difficult will be to persuade “decision makers to regard lay knowledge of persons affected by leprosy as relevant not only for the monitoring and evaluation of public policies (from public health to positive action), but also for their design.”

And Ms Cruz will be joining the ILEP panel of persons affected by leprosy at their next meeting in March, in the UK. “I am looking forward to learn the ILEP panel of persons affected by leprosy’s views on the elimination of discrimination and to discuss how can we cooperate to achieve such a goal.”

Interview by ILEP’s Rosa Argent.

New Global Partnership for Zero Leprosy launches to accelerate progress toward a world without leprosy

• Innovation in science offers new opportunities and hope for achieving zero leprosy.
• The Partnership will coordinate research in new diagnostics, strategies to interrupt transmission, translation of new evidence into action, and will help strengthen national programs.
• World Leprosy Day (Jan 28) raises awareness of a disease with more than 200,000 new diagnoses per year, primarily in India, Brazil and Indonesia.

Ahead of World Leprosy Day on Sunday 28 January 2018, several leading leprosy groups have joined forces to launch a Global Partnership for Zero Leprosy to accelerate progress towards a world without leprosy, also known as Hansen’s disease.

The Global Partnership for Zero Leprosy brings together organizations including the Novartis Foundation, the International Federation of Anti-Leprosy Associations (ILEP), the International Association for Integration, Dignity and Economic Advancement (IDEA), as well as national leprosy programs, with support from the World Health Organization (WHO). The secretariat for the partnership will be hosted by the Task Force for Global Health in Decatur, GA, USA.

“Our common vision is zero leprosy. The formation of the Global Partnership for Zero Leprosy is a major step forward in fighting the disease and giving hope to patients,” said Dr. Ann Aerts, Head of the Novartis Foundation. “By combining expertise and coordinating research and funding efforts, we will be able to take advantage of new and innovative approaches to accelerate progress towards the elimination of leprosy.”

Despite the availability of effective multi-drug therapy for the last 30 years, the number of newly diagnosed leprosy patients has remained above 200,000 per year for the last decade, including thousands of children. i,ii

This is due to barriers such as inadequate resources and stigma, which make diagnosing and treating leprosy difficult and allow the disease to continue to spread. However, scientific innovation is changing the way we approach leprosy.i,iii Instead of simply focusing on treatment, we can now implement innovative ways to interrupt transmission of the disease. iv

“Recent innovations mean we are now able to build the final roadmap to eliminate leprosy once and for all,” said Jan van Berkel, ILEP President. “Disease elimination is too big a challenge for one organization or sector alone, and the NGO community looks forward to contributing to the combined expertise of the partnership. Together, I am optimistic that we can achieve zero leprosy.”

Today, around 2 million people are thought to be living with significant disabilities as a result of leprosy and many millions more are affected by leprosy-associated stigma or have undiagnosed and untreated leprosy.iii If left untreated, the infection can spread to others and cause progressive and permanent damage to the skin, nerves, limbs and eyes.

“The fear of stigma and discrimination will often stop persons who might have early signs of leprosy from seeking treatment,” said José Ramirez, Jr., board member, International Association for Integration, Dignity and Economic Advancement (IDEA). “Leprosy is a form of bullying because of the labelling, rejection and fear towards persons affected.”

The Global Partnership for Zero Leprosy will coordinate action in three key areas: (1) accelerating research in new diagnostic and therapeutic tools, interventions, and strategies to interrupt leprosy transmission; (2) mobilizing technical assistance and expertise to strengthen existing national programs and accelerate translation of new evidence into action; and (3) increasing advocacy and fundraising.

“The Global Partnership for Zero Leprosy adds momentum to global efforts to end discrimination of persons affected by leprosy and to reach zero transmission and the eventual elimination of this age-old disease,” said Dr. Erwin Cooreman, Team Leader of WHO’s Global Leprosy Programme.

For more information on the Global Partnership for Zero Leprosy visit www.zeroleprosy.org.

REFERENCES

i World Health Organization, Weekly Epidemiological Record, 1 September 2017. Vol. 92, 35 (pp. 501-520). Available at: http://apps.who.int/iris/bitstream/10665/258841/1/WER9235.pdf
ii Smith, C. S., Noordeen, S. K., Richardus, J. H., Sansarricq, H., Cole, S. T., Soares, R. C., … & Baruaf, S. (2014). A strategy to halt leprosy transmission. The Lancet Infectious Diseases, 14(2), 96-98. Available at:
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(13)70365-7/abstract
iii World Health Organization. (2016). Strategy 2016-2020: Accelerating Towards a Leprosy-free World. WHO SEARO/Department of Control of Neglected Tropical Diseases, New Delhi. Available at:
http://apps.who.int/iris/bitstream/10665/250119/5/9789290225256-Eng.pdf
iv Peter Steinmann, Steven G Reed, Fareed Mirza, T Déirdre Hollingsworth, Jan Hendrik Richardus. Innovative tools and approaches to end the transmission of Mycobacterium leprae. Lancet Infect Dis 2017; 17: 298–305
v Richardus, J. H., Nicholls, P. G., Croft, R. P., Withington, S. G., & Smith, W. C. S. (2004). Incidence of acute nerve function impairment and reactions in leprosy: a prospective cohort analysis after 5 years of follow-up. International journal of epidemiology, 33(2), 337-343. Available at: https://www.ncbi.nlm.nih.gov/pubmed/15082636
vi World Health Organization, Leprosy factsheet. Available at: http://www.who.int/mediacentre/factsheets/fs101/en/

Preventing leprosy in children: global push needed to end modern-day disease

Blog by Dr. Paul Saunderson, ILEP ITC Chair and Medical Director of American Leprosy Missions, and Rosa Argent, ILEP Comms Manager

Leprosy is commonly known as the oldest human disease, given its biblical references and recognition in the ancient civilizations of China, Egypt and India, yet receiving a life-altering diagnosis of leprosy is a reality that affects tens of thousands of children each year.

On average, another child is diagnosed with leprosy every half hour. Contrary to popular beliefs, this is very much a modern-day disease.

For Sakshi, the first sign that she had leprosy came when she was just ten years old. She noticed her little finger on her right hand had become swollen and painful. After a few weeks her whole hand became numb and she started having trouble gripping her pencil. Her classmates began to notice and started bullying her, calling her ‘lulli’, a derogatory term for someone who is disabled. Eventually she stopped going to her local school as she could not keep up with her work.

Sakshi is from a rural village in Bihar, India – the country with more than 60% of global leprosy cases – yet her story is all too common across the world in often poor and marginalised communities where pockets of the disease remain endemic.

In 2017, the WHO reported a total number of 18,230 new child cases of leprosy. This is roughly 9% of the total number of global cases reported annually. The significant number of children contracting leprosy year on year concerns global health experts as it shows that transmission of the disease persists throughout communities.

Worryingly, reports in some countries have found that about 11% of children already have visible impairments at the time of diagnosis, indicating late detection.

For a disease that is curable – through multi-drug therapy treatment, which is provided free of charge globally by the Novartis Foundation – too many children are still ending up with preventable disabilities.

Leprosy is caused by a bacillus, Mycobacterium leprae, which multiplies very slowly and has a long incubation period of around 5 years.  The bacteria attack nerve endings and destroy the body’s ability to feel pain and injury, often leading to wounds and infections. Similar to the common cold, it is believed that leprosy is spread by air through droplets from the nose and mouth. But unlike the common cold, it is only mildly infectious.

This means that children are most likely to contract leprosy at home, from close and prolonged contact with an infectious person. Research tells us that if you live in a household with a person who has untreated leprosy, you have an 8-fold risk of getting leprosy yourself, compared with the general population.

One technique being used to stop this spread is the examination of all household contacts whenever a new case of leprosy is diagnosed. Anyone newly diagnosed will be started on multi-drug therapy treatment immediately. In some areas, a single dose of antibiotic is also given to all household contacts without symptoms of the disease.

This simple action prevents leprosy in more than half of those who are already incubating the disease. Known as post-exposure prophylaxis, this is a promising treatment strategy that could help drive down the number of children contracting leprosy.

While globally great strides have been made to reduce the incidence of leprosy, the most recent WHO figures reveal that over 100 countries reported cases of leprosy, while more than half of these reported leprosy in boys and girls under 15 years old.  The widespread nature of this disease indicates that a coordinated international response is required.

On World Leprosy Day, Sunday 28 January, ILEP and partners are highlighting the need for a concerted global effort to prevent leprosy-related disabilities in girls and boys.

Children as young as nine are presenting with multiple disabilities, arising from clawed hands and foot drop, and are needing reconstructive surgery and physiotherapy to recover.

Gruelling medical interventions aside, children with leprosy often face crippling social barriers, including the loss of education, bullying and even rejection by family members because of the stigma associated with this disease.

Sakshi had to temporarily endure the pain of exclusion by her classmates and the inability to continue her education for a year. Yet she was fortunate to receive a diagnosis at the Lepra run Munger referral centre and thanks to a 12-month course of multi-drug therapy, she has no lasting disabilities relating to her diagnosis. She has returned to school and is working to fulfil her wish of becoming a teacher.

If we are to bring child leprosy rates down, the global health community must work with national governments to strengthen health care systems, improve early case detection and expand preventative treatments. We must ensure adults diagnosed with leprosy complete their treatments properly to stop the disease spreading in households. We must also get serious about ending discriminatory laws and practices, and increasing participation of people affected by leprosy, something ILEP members are committed to.

By working in collaboration to tackle leprosy on three fronts – zero transmission, zero disabilities and zero discrimination- we can stop leprosy from stealing childhoods, and take an important step closer to consigning this disease to history.

World Leprosy Day 2018 is focused on preventing girls and boys from developing disabilities associated with leprosy.

Sakshi’s story: Preventing life-long disabilities in children with leprosy

When Sakshi was just ten, she noticed her little finger on her right hand had become swollen and painful. After a few weeks her whole hand became numb, and she found she was having trouble gripping her pencil. Her classmates began to notice and started bullying her, calling her “lulli”, a derogatory term for someone who is disabled. Eventually she had to stop going to school because she could not keep up with her school work.

Sakshi’s parents took her to the health centre in her village, Tetia Bamber, however she was misdiagnosed and prescribed drugs which cost 400Rs (£4) a week, yet did not treat her condition.

After completing a year of treatment at a cost of over 20,800Rs (£200) and seeing no improvement in her condition, her family took her to see an orthopaedic surgeon who referred her to the District Hospital where she was diagnosed with leprosy. Sakshi was then sent to Lepra’s referral centre for specialised care, where she completed a 12-month MDT and steroid course to treat the disease. She also received physiotherapy and assistive devices to improve the flexibility and strength in her hand and she has now regained the use of her hand, can now grip well and is able to write once again.

Unfortunately due to lack of training at the Tetia Bamber health centre Sakshi had to endure a year experiencing the effects of leprosy, and missing out on her education and childhood, whilst her family had to pay for an expensive and incorrect treatment. However, thanks to a quick diagnosis at the District Hospital and treatment by our staff at the Munger referral centre Sakshi was treated in time to stop any permanent disability setting in, this has allowed her to return to a normal life. She is very happy with the results of her treatment and has now gone back to her school to continue her studies and fulfil her dream to become a teacher.

“When I was diagnosed with leprosy my family were very worried and thought no one would want to marry me in the future. But now I am feeling well and confident. I have re-joined my school and hope to become a mathematics teacher when I am older.”

– With thanks to Lepra for sharing this case study.