Oshima is one of the Inland Sea islands participating in the 2010 Setouchi International Arts Festival, during which islands put on exhibitions illustrating their culture and art, and what makes them unique. Oshima is distinctive for the isolation it represents; it is the only island in Japan to which people affected by leprosy were banished whose only other community has ever been a few fishermen.

Since marking its centenary in 2009, the island Sanitorium of Oshima has been regularly in the news and has attracted the attention of a number of civil society organisations. Interest has been fuelled as this coincided with the passing of the Law on the Promotion of Issues Related to Hansen’s disease in that same year. One element of this Law called for the preservation of historic buildings and other items to promote a better understanding of leprosy.

Learning of this find under the sea, an Associate Professor at the Nagoya Zokei University of Art and Design, Nobuyuki Takahashi, wondered whether the table could be part of a “Yasashii Bijutsu Project” (“Kind Art Project”), a Project that could raise awareness of the lives lived by residents of the Sanitorium.

Professor Takahashi consulted Takahisa Yamamoto, a 77-year-old head of an organisation of former residents of the Sanitorium, who shared the views of the former residents that if the table were not shown just as an exhibit, but “…as something that stirs emotion in those who see it…” it could provide a valuable educational experience. 

The two metre table is now being incorporated into an exhibition in a café for visitors that is being set up within the former Sanitorium, and will be used to tell the story of the approximately 4,000 persons who lived and died on Oshima.

Dr Mitsuda was a pathologist who worked at that Sanitorium. Since little was known about leprosy then, and there was no cure, he performed autopsies in the interests of scientific research. Dr Mitsuda’s handwritten atlas of the pathology of leprosy was much in demand during his lifetime, even outside Japan. In 1931, Dr Mitsuda opened another sanitorium the Nagashima Aisei-en. This is the setting for Jeff Talarigo’s novel The Pearl Diver about a teenager who discovers she has leprosy and has to change her name and forget her hopes for the future when she arrives at the sanitorium.

According to Mrs Kay Yamaguchi, who is on the Board of Directors of the Sasakawa Memorial Health Foundation, it is strongly believed in Japan that the stigma surrounding leprosy can be eradicated by learning from its nation’s heritage and history. Further it is to be hoped that assimilation of the challenges posed by stigma through such heritage advocacy can help prevent stigmatisation of other people for whatever reason in the future.

Setouichi International Art Festival:
http://japan-articles.japanican.com/en/articles/setouchi_art_festival.html?utm_source=press_release&utm_medium=press_release&utm_campaign=setouchi_pr

Japan: Law on Promotion of Issues Related to Hansen’s Disease
http://www.ilep.org.uk/news-events/article/view/japan-law-on-promotion-of-issues-related-to-hansens-disease/346/

Reviews of the The Pearl Diver by Jeff Talarigo
http://www.amazon.com/Pearl-Diver-Novel-Jeff-Talarigo/dp/0385510519   

Other island sanatoria in Japan
The Nagashima Aisei-en and Oku Komyo-en sanitoria were built on an island just off the Honshu coast. A bridge was constructed to link this island to the mainland twenty years ago. The Miyako Nansei-en on Okinawa and Amami Wako-en on Kyushu sanatoria were built on larger islands of Okinawa and Kyushu respectively, where other communities exist.   

ILEP Member LEPRA Health in Action will welcome a new Chief Executive Sarah Nancollas in September 2010.

A third sector professional with a corporate background, Sarah has twelve years’ experience at chief executive level in international non-governmental organisations and over ten years’ experience with and in ministries of health in developing countries.

Sarah is currently Chief Executive of the Canon Collins Trust, an educational charity. Previously she held management positions within Save the Children, British Petroleum PLC and Price Waterhouse. Whilst with Save the Children, Sarah helped establish Transaid, a development charity that aims to reduce poverty and improve livelihoods across Africa and the developing world through improved transport and logistics.

Sarah will bring a wealth of experience to her new role. Her strategic planning and fundraising skills, as well as her experience of advocacy and partnership development within the UK government and corporate sectors, will be invaluable to the support LEPRA provides to projects in the developing world. 

In 1987, Netherlands Leprosy Relief established a Committee for Scientific Research comprising a number of experts, each of whom monitors a particular field of research. This Committee appraises all proposals on leprosy research submitted to NLR for their quality, feasibility and relevance, and subsequently advises the Board of the NLR on funding these proposals. The Secretariat of the Committee is located in the office of NLR. One of the tasks of the Project Co-ordinator for Scientific Research is to manage this Secretariat, while another role is to be the Secretary of this Committee.

Nicole takes over this co-ordinating position from her colleague Mr Jan Willem Dogger. She had been his assistant for eight years and considers that this experience will be invaluable to her as she takes on this responsibility. Nicole considers research an important instrument to develop more effective tools for leprosy control. Having studied human geography of developing countries and having done field work in Bolivia, Nicole realised her dream of working for a not-for-profit organisation involved with stimulating international development, when she became a member of the NLR team in 2002.

E-mail: n.dinnissen@leprastichting.nl 

Disability was not mentioned when the Millennium Development Goals were launched in 2000. Since one in five of the world’s poor is affected by disabilities, their exclusion threatens achievement of the MDGs.

TLM is concerned to ensure that the needs and rights of persons affected by neglected tropical diseases, such as leprosy, and those affected by disability are included in a document that will be produced during that plenary review. An early draft of the document, Keeping the Promise – United to Achieve the MDGs, has been circulated to governments giving them an opportunity to suggest changes. TLM drafted a Briefing Paper for Members of the UK Parliament and the Department for International Development raising awareness of TLM’s specific concerns and their importance to achieving the MDGs.

TLM asks that those who represent the UK at the plenary review this September ensure the following points are in the outcomes document:

• Mention of the one billion plus people who are still affected by chronic disabling infections of neglected tropical diseases, particularly those living in remote rural areas, urban slums or conflict zones.
• Reference to the need to ensure that civil society, including persons with disabilities and disabled people’s organisations are included in planning and implementing development policies and programmes at the international and national levels.
• Note that growth should be accessible to all, including persons with disabilities.
• Note that resources allocated at the international and national level should be made in such a way as to be beneficial to persons with disabilities.
• Need to take effective measures for social inclusion and integration what focus on the most excluded and marginalised groups, including persons with disabilities.
• Governance should encompass persons with disabilities.
• Monitoring and data related to the MDGs should include persons with disabilities.

In addition, TLM is urging UK parliamentarians ensure the following points are incorporated into the outcomes document:

MDG One: Eradicate Extreme Poverty and Hunger

- Access to decent and productive employment should include persons with disabilities.

- Identification of barriers that prevent access for, and inclusion of, persons with disabilities and their removal.

MDG Two: Achieve Universal Primary Education

- Removal of barriers to educational systems on the basis of gender, disability, health or language can receive an education and have learning opportunities.

- Provision of information to families affected by disabilities about the right to access primary education.

- Highlighting of issues of accessibility, for example making school environments and curricula accessible.

- Addressing root causes of disparities, exclusion and discrimination against children not in school, including children with disabilities.

- Strengthening efforts aimed at ensuring that aid supports education systems that are inclusive of and accessible to persons with disabilities.

MDG Three: Promote Gender Equality and Empower Women

- Increasing accessibility to, and inclusion of girls with disability, in education systems.

- Ensuring that national health systems have the capacity to deliver equitable health services, especially to persons with disabilities, and reduce barriers that prevent uptake of health services.

- Comprehensive community based primary health care services should be accessible and inclusive for all.

MDG Four: Reduce Child Mortality

- Ensuring early identification of children with impairments and referral of children to appropriate medical and rehabilitation services where required.

MDG Five: Improve Maternal Health

- Ensuring that action at all levels addressing the interlinked root causes of maternal mortality and morbidity pays particular attention to women and girls with disabilities.

- Supporting women and girls with disabilities in accessing maternal health services. 

MDG Six: Combat HIV/AIDS, Malaria and Other Diseases

- Scaling up of prevention efforts, as also the biomedical, behavioural and social and structural interventions, such as empowerment of women and persons with disabilities, stigma reduction and protection of human rights, should include persons with disabilities.

- Renewal of efforts to prevent and treat neglected tropical diseases to address issues of stigma and social inclusion, including collection of data on prevalence and those treated.

MDG Seven: Ensure Environmental Sustainability

- Continuing to increase sustainable access to water should include older persons and persons with disabilities and take account of their specific access needs.

- Supporting the involvement of persons with disabilities in designing safe water and sanitation facilities.

MDG Eight: Develop a Global Partnership for Development

- Enhancement of international co-operation ensuing access to affordable, high quality and effective medicines for all, including persons with disabilities.

- Ensure continued and co-ordinated support for drug administration and stigma reduction programmes for neglected tropical diseases.

Mrs Siân Arulanantham, TLM’s Head of Programmes Co-ordination, gave a copy of this Briefing Paper to Stephen O’Brien, Under Secretary for International Development and to Douglas Alexander, Shadow Secretary for International Development, at the House of Commons at the end of June

Another campaigning measure TLM has taken is to sign A Last Chance to Keep our Promises, a joint statement, co-ordinated by BOND, a UK membership body for civil society organisations working in international development. This statement asks the UK government to show international leadership and to take action on certain priorities.  

For more information contact:
Siân Arulanantham (Mrs), Head of Programmes Co-ordination, TLMEW,  siana@tlmew.org.uk

Link: Briefing Paper

Of Interest:

A Last Chance to Keep our Promises:
http://www.bond.org.uk/data/files/mdg_statement_final_for_june_10.pdf

Millennium Development Goals Report 2010 (issued 23^rd June):
http://www.un.org/millenniumgoals/pdf/MDG%20Report%202010%20En%20r15%20-low%20res%2020100615%20-.pdf 

WER 8529: http://www.ilep.org.uk/fileadmin/uploads/Documents/WER/wer8529.pdf 

This issue also features the canonization of Father Damien, World Leprosy Day in Niger and the USA and key articles agreed by States at an autumn Convention in Turkey in 2008 to improve the lives of persons affected by leprosy. 

Click on the following link for issue on the theme of dignity:
http://www.idealeprosydignity.org/newsletter/Vol-13-2/Vol-13-2%20DignityStdFINAL.pdf

IDEA newsletters archive: http://www.idealeprosydignity.org/newsletter/newsletter.htm  

It functions in close collaboration with national and international research laboratories as well as other components of LEPRA India to pursue research in clinical, operational, field and basic research studies.

Dr Subbanna has been Director of the BPHRC since January, 2010 and kindly agreed to share some of his thoughts about the BPHRC and leprosy research specifically. 

- What leprosy mysteries have to be resolved if we are to rid the world of leprosy?

• The early diagnosis of leprosy nerve damage and its consequences
• The identification of human and extra-human (any intermediate hosts/vectors etc) sources of transmission
• The successful culture of M. leprae in vitro 
• Prevention by vaccination 
• Early detection of the infection and drug resistance

- Which of the current research projects into leprosy do you consider may yield findings that will have a bearing on leprosy control strategy worldwide?

• To control transmission 
• Early diagnosis

- Of the ongoing research being conducted through the BPHRC – lower touch sensibility in the extremities of healthy Indians: further deterioration with age: clinical profile of leprosy in urban and semi-rural field areas; retrospective study of neuritis cases from 2000 to 2006; pattern of relapse in leprosy in an out-patient clinic in Hyderabad; thalidomide; ultrasonography of peripheral nerves in leprosy patients; study of viability of M. leprae in clinical samples and possibility of its presence in the environment using nucleic acid amplification techniques; study of T regulatory cells in human leprosy; role of genetic factors relevant to cytokines and immune responses in leprosy – which interests you the most and why?

• The study of viability in the environment interests me the most as this would help us understand the transmission dynamics and thus help in leprosy control strategy
• Immunological factors rendering a contact susceptible to leprosy

- What rapid molecular tools have been developed by the BPHRC to facilitate study of how leprosy is transmitted?

• Strain typing to study short chains of transmission
• Single-nucleotide polymorphism to study the global distribution of leprosy

- Have there been any recent advances in diagnosing drug resistance in patients?

• We have screened patients for primary and acquired drug resistance using molecular tools. Thus molecular diagnosis of rifampicin, dapsone and oflaxacin has been standardised

- What do you think of the findings published in the New England Journal of Medicine in December 2009 by scientists in Singapore and China that seem to indicate that there are variants to seven genes that appear to increase a person’s susceptibility to leprosy?  

• The function of the identified genes have to be elucidated 

- Is there any one scientific discovery about leprosy that stands out for you? 

The complete genome sequencing of M.leprae has paved the way for researchers to understand the pathogenesis and identify tools for early diagnosis and transmission.

- Of findings made at the BPHRC which, in your opinion, has had the greatest impact and influence?

• Analysis of strain typing results indicated that these tools could identify common source of infection in a family by showing identical Variable Number of Tandem Repeat (VNTR) pattern
• A study on secondary infections in plantar ulcers in leprosy patients has been conducted (during 2005-06), at BPHRC in collaboration with Sivananda Rehabilitation Home (German Leprosy and Tuberculosis Relief Association). The study facilitated the tertiary care referral centre to adapt an appropriate antibiotic regimen and cost effective management of infected plantar ulcers

- Can you comment on how collaborating internationally has opened up possibilities to work with the best minds, organisations and research facilities…

• Collaboration with Colorado State University (CSU) helped us with the training of our staff and also with outsourcing the modern molecular techniques for strain typing initially

 - What new partnerships are you thinking of building in the near future? 

• National: Central Leprosy Division of the Government of India & the South-East Asia Regional Office (SEARO) of the World Health Organization and The Leprosy Mission
• International: Institute for Tropical Medicine, Tubingen, Germany; London School of Hygiene and Tropical Medicine, London

- What other key features are in the BPHRC current strategy?

• Molecular epidemiology of M. leprae by linking lab and field projects
• Immunological factors of human host relevant to cytokines and T cells
• Genetic susceptibility factors of human host 
• Direct laboratory services for diagnosing multi drug resistant TB in collaboration with AP State Govt and basic and operational research in relevant areas is in place at BPHRC. Similar strategy is planned for leprosy drug resistance in collaboration with the WHO SEARO and the Central Leprosy Division of the Government of India

Blue Peter Public Health & Research Centre: http://www.leprasociety.org/bprcback.htm        

Shri M Hamid Ansari, the Vice-President of India, was in Sewagram in Wardha district on 1^st July 2010 to present the 2009 International Gandhi Award to Vidarbha Maharogi Sewa Mandal, a non-governmental organisation for leprosy patients, and Dr Vijaykumar Pannikar, former Team Leader of the Global Leprosy Programme.

Referring to Mahatma Gandhi’s special concern for persons affected by leprosy, he called upon everyone to adopt a positive approach towards persons affected by leprosy and to accept them in society. He said: “While the government and civil society have taken up this task, I believe there is great merit in going back to the Gandhian focus on the individual citizen. Each one of us in our own sphere must show greater awareness about leprosy and proactively take steps to end the social discrimination and bring about the social integration of the leprosy affected persons”.

These awards have been presented since 1986 as a way to commemorate Mahatma Gandhi’s service to persons affected by leprosy and his scientific approach to leprosy. Those who receive this award are recognised as having made an outstanding contribution to leprosy work and improving the lives of persons affected by leprosy. Previous recipients include Cardinal P E Léger, Dr V Ekambaram, the All Africa Leprosy and Tuberculosis Rehabilitation Training Centre in Ethiopia and Professor Michel Lechat.

Press Release issued by the Press Information Bureau of the Government of India including the text of the Vice-President’s address: http://pib.nic.in/release/release.asp?relid=62953

See Interview with Dr Pannikar published end of November 2009:
http://www.ilep.org.uk/news-events/article/view/in-conversation-with-dr-pannikar-team-leader-global-leprosy-programme/

In the statement of the reason and purpose of the bill, it was said that the Act had been made to segregate leprosy patients because at the time it was believed that leprosy is contagious and not curable. However, it has since been scientifically proven that leprosy is fully curable and that it is not necessary to separate people with leprosy from the rest of the population. Also at the Tenth Meeting of the World Health Organization’s (WHO’s) Technical Advisory Group for leprosy of April 2009 they stated: “… in public health terms, it is reasonable to conclude that a leprosy patient’s infectiousness becomes negligible after starting multidrug therapy (MDT).”

Writing about the Bill to repeal this Act for the Daily Star, the Reverend Martin Adhikary noted: “To be sure, the segregating ancient Lepers Act 1898 does not have a raison d’être. It violates human rights and dignity; it goes against the Constitution of our country as well as all the universal Charters and Declarations of human rights. The repealing of this Act will help our society in mainstreaming the people affected by leprosy, and pave the way for the restoration of their dignity.”

Reverend Martin Adhikary, who is the Director of Advocacy and Promotion of The Leprosy Mission International-Bangladesh and a social worker, has been long been lobbying for the annulment of this Act.

The Lepers Act 1898
This was passed by the then British-India government to control and deal with people who had leprosy, allowing the government to appoint asylums where people affected by leprosy would live; prohibiting people affected by leprosy pursuing various lines of employment and prohibiting employers employing people affected by leprosy and other such provisions prejudicial to the lives of persons affected by leprosy:
http://bdlaws.gov.bd/print_sections_all.php?id=74

Article Still Stigmatised by the Reverend Adhikary published in The Daily Star 2^nd June 2010: http://www.thedailystar.net/newDesign/news-details.php?nid=140965

Article The Lepers Act 1898 Needs to be Repealed by the Reverend Adhikary published in The Daily Star 14^th March 2009:
http://www.thedailystar.net/pf_story.php?nid=79572 

Example of an Indian State, Karnataka, which repealed the Leprosy Act in 1988:  
http://dpal.kar.nic.in/.%5C25%20of%201989%20(E).pdf 

This is a historic ruling for persons affected by disabilities everywhere in Vietnam. All organisations that have long been lobbying for such legislation to ensure efforts are made to improve the lives of persons living with impairments have welcomed it with open arms too. These include the Hanoi Blue Dreams Volunteer Group, which has been active since 2003. The volunteers of this Group and disabled persons throughout the country will be eager to ensure that its 53 articles are followed when it is enacted next year.

The Hanoi Blue Dreams Volunteer Group

Defending the Cause of Persons with Disabilities

The activities of this dynamic volunteer group have been wide-ranging. And, to date, they have helped numerous individuals. Among their leaders are many young persons with disabilities, who have provided a friendly and safe environment in which persons with disabilities can discuss the daily challenges they face. This Group has played an important role in helping develop the organisational, leadership and project skills of persons with disabilities so that they can form their own disabled peoples’ organisations (DPOs). In this way, the Group has helped stimulate the formation of DPOs in provinces such as Ha Giang, Ha Nam and Ninh Binh and cities such as Nam Dinh, Can Tho, Da Nang and Hanoi. They were among the first to set up this type of organisation in the capital.

These volunteers act and fight for the rights of all persons with disabilities. Over a period of many years they lobbied the Government successfully for the use of “khuyết tật, rather than “tàn tật“, replacing the use of “handicap” with “disability”, because of the deeply negative connotations of “tàn tật“ in Vietnam. Their vigilance in observing whether governmental policies related to the rights and legal interests of persons with disabilities are implemented, such as making public buildings accessible, has gained them respect and attention from the national government.

In recent years, the government has appreciated the participation not only of individuals, but also of DPOs in formulating policies and laws for persons with disabilities. The government was very receptive to comments on, and suggestions and expectations for the Draft Disability Law, many of which were included in the Disability Law.

Persons with Disabilities Due to Leprosy

For over twelve months now, this group of volunteers has taken a special interest in helping persons with a disability as a result of leprosy, whom they realised were being excluded from other programmes and activities for people with disabilities for many reasons, not least of which their isolated living conditions. Most are in centres managed by dermatology hospitals, which support them in their everyday lives. Society tends to regard them as patients still, even though they no longer have leprosy, which poses a barrier to their re-integration into the community.

To begin breaking down this substantial barrier, the Hanoi Blue Dreams Volunteer Group is planning to establish self-help groups of people with disabilities as a result of leprosy train them and help them until they can find their own voice and start joining in activities for all with disabilities and claim their rights. The Group has already helped over 600 individuals with disability due to leprosy. It has organised successful meetings between people with disabilities for reasons other than leprosy with those with disabilities caused by leprosy. Also persons with disabilities due to leprosy have been given opportunities to participate in programmes for people with disabilities from other causes.

Network of Persons with Disabilities

To bring together all persons with disabilities in Vietnam, the Hanoi Blue Dreams Volunteer Group plans to create a network of self-help organisations for persons with disabilities throughout the country. It is hoped that these connections can be maximised through the creation of a website where news and views can be shared easily. Articles in magazines will also be published. These measures should not only help increase awareness about persons with disabilities, but also spur on the passing of the Disability Law. 

Changing Attitudes towards Persons with Disabilities

Other advocacy work undertaken by the Hanoi Blue Dreams volunteers to bring about awareness and increase awareness of the issues faced by persons living with disabilities includes providing information on websites, in newspapers and on television. And organising special events to mark the International Day of Persons with Disabilities of 3^rd December and the Vietnamese Day of Persons with Disabilities on 18^th April (chosen as the day in 1980 when Vietnam established a National Committee in response to the First Asian and Pacific Decade of Disability).

These activities are helping to change society’s attitudes towards persons living with disabilities, by increasing understanding of the daily experiences of persons with impairments. In fact, it has motivated some members of the general public to volunteer to help persons with disability.

Of no less importance have been training courses the volunteers of the Hanoi Blue Dreams Volunteer Group have provided to persons with disabilities to improve their independence by training them in coping strategies. 

End Note

The passing of this Disability Law is one of many other positive measures, such as those of the Hanoi Blue Dreams Volunteer Group described above, that are paving the way for Vietnam to ratify to the United Nations Convention on the Rights of Persons with Disabilities.

Contact Mr Trinh Công Thanh, Chair, People with Disability Vietnam:  trinhcongthanh@gmail.com

People with Disability Vietnam (website in Vietnamese): http://pwd.vn/ 

More information on this position can be found in the following link (in English):
http://www.dahw.de/jobs/job-advertisement 

This is available in German through the following link: http://www.dahw.de/die-dahw/freie-stellen/mediziner 

Dr Rao joined LEPRA India in 1989 as Medical Officer at LEPRA Hyderabad leprosy project (HYLEP) and in 2003 he was appointed as Chief Executive of LEPRA India

Before joining LEPRA Dr Rao worked for two years as a Medical Officer in a leprosy hospital supported by the German Leprosy Relief Association, and for five years in the Indian Army Medical Corps.

Dr Rao has been instrumental in establishing leprosy projects in Orissa, Andhra Pradesh, and Bihar and his major contribution was the establishment of prevention of disability (POD) programmes in all LEPRA India’s field projects.   He also conceptualised and piloted the referral centre in an integrated setting to provide specialised care for leprosy patients with deformities.  Under his leadership, LEPRA has broadened its vision in India into allied diseases like TB and HIV/AIDS.

Dr Rao has 20 publications to his credit and has presented papers in international conferences covering Leprosy, TB, HIV/AIDS and tropical diseases like lymphatic filariasis. He also participated in the evaluation of Maldives Leprosy Eradication Programme commissioned by South-East Asia Regional Office of the World Health Organization. 

Learn more by reading ALM’s press release

Sarah Hesshaus e-mail: shesshaus@leprosy.org
Nikki Brown e-mail: nbrown@leprosy.org