Dr Ganapati was born on 6th July 1930 in Tirunelveli, Tamil Nadu, India. He completed his medical education in Madras. He established a Primary Health Centre in Valathi in Tamil Nadu, where first he met many persons with deformities caused by leprosy. However, it was not until later, when he was working as Assistant Medical Officer for the Acworth Leprosy Hospital that he began to learn much more about leprosy from Dr N Figueredo. Within a year he was appointed a Research Officer. To fight the injustice perpetrated against patients and staff in the hospital he motivated colleagues and associates to form an activist group, which set up the Acworth Leprosy Hospital Society for Research, Rehabilitation and Education in Leprosy non-governmental organisation. Dr Ganapati and a colleague caused a stir by stopping wearing examination gloves.

In the early 1970s Dr Ganapati had the opportunity to go to Chingleput, Madras, where he gained deeper knowledge about leprosy, including clinical aspects and field expertise. He came to know how to plan leprosy field programmes in the most rational and cost-effective way and acquired a better understanding of the transmission and causation of leprosy. He specialised in integrated approaches to managing leprosy programmes that would help remove the stigma associated with leprosy.

In 1976 Dr Ganapati established the Bombay Leprosy Project, a research-oriented field project, where he carried out pioneering work. Research trials carried out by
Dr Ganapati resulted in multi-drug therapy, which is still used to treat persons with leprosy. Writing to colleagues on the Leprosy Mailing List Dr H Srinivasan, retired orthopaedic surgeon, noted that “… Dr Ganapati’s name was synonymous with ‘urban leprosy control’”… “ and he showed that good quality leprosy work could be done successfully in the urban metropolitan milieu and how that could be done. That was not an easy task as anybody with experience in field work would avow.”

Among the many honours received by Dr Ganapati were the national Padma Shri Award in 1983 and the JALMA Trust Fund Oration Award in 1986 by the Indian Council for Medical Research. Dr Ganapati published hundreds of scientific papers about various aspects of leprosy in medical and scientific journals.

Remembering Dr Ganapati, Mr Douglas Soutar, General Secretary of ILEP, says: “I met him on many occasions and he was clearly someone greatly respected in the leprosy world and a man who had the rights and dignity of persons affected by leprosy at the core of his heart and life’s work. He will be greatly missed by very many people in India and around the world.”
 
Dr VV Pai, Director of the Bombay Leprosy Project, has said that Dr Ganapati’s
“… vision and mission of a leprosy free world will be kept going by his committed team.”

Participants announced specific pledges and commitments in a London Declaration.

See press release:
http://www.unitingtocombatntds.org/downloads/press/ntd_event_press_release.pdf

See also the news item about WHO’s Roadmap to Accelerate the Global Impact of Neglected Tropical Diseases: http://www.ilep.org.uk/news-events/article/view/roadmap-to-accelerate-the-global-impact-of-neglected-tropical-diseases/581/ 

This roadmap was adopted in 2011 by WHO’s Strategic and Technical Advisory Group for Neglected Tropical Diseases. The targets in it are based on recommendations made by Member States in several World Health Assembly resolutions.

A Roadmap for Implementation

A Roadmap for Implementation: Executive Summary

See also news item: Partners Unite to Combat Ten Neglected Tropical Diseases by 2020:
http://www.ilep.org.uk/news-events/article/view/partners-unite-to-combat-ten-neglected-tropical-diseases-by-2020/582/

Speaking at an event at the Royal College of Physicians, Uniting to Combat Neglected Tropical Diseases, in London on Monday, the Chief Executive Officer of Novartis said: “Since 2000, we have worked with the WHO to provide free treatment to leprosy patients globally, but we know that no single actor – no matter how committed to patients – can eliminate this debilitating disease alone.”

This event was attended by representatives of the UK and US governments, 13 pharmaceutical companies, the Bill & Melinda Gates Foundation, the World Bank and non-governmental organisations to bring a unique focus on ridding the world of Neglected Tropical Diseases.
 

Press release:
http://www.novartisfoundation.org/platform/content/element/4506/Novartismediarelease--Leprosycommittment-January2012EN.pdf

Individual agents and regimens, drug resistance, relapse rates, operational aspects of multi-drug therapy delivery and compliance, including optimising directly observed therapy, side effects/toxicities and chemoprophylaxis would be of particular interest.

Deadline for submissions: 1st May 2012

For more information:
http://www.leprahealthinaction.org/lr/Dec11/82_4_Call_for_paper.pdf

“It is vital that in 2012 the global rhetoric on human rights in leprosy be now translated into practice and action” says Mr René Stäheli, President of ILEP. There is still much discriminatory legislation in many countries that hinders the participation of persons affected by leprosy in basic aspects of every day life.

ILEP understands how people affected by leprosy can themselves be agents of change and helps provide the encouragement and other means to achieve this in line with the current WHO global strategy. This stresses that persons affected by leprosy have a definite role and responsibility to play for example in improving self-care activities. These individuals can also help trigger changes in perceptions, attitudes and policies through awareness generation and advocacy efforts.

Message from ILEP President in English

Message from ILEP President in French

The theme for this Congress is CBR – the key to realising the Convention on the Rights of Persons with Disabilities. The overall objective will be to promote CBR as a global strategy to realise the Convention on the Rights of Persons with Disabilities.

Congress website: http://www.cbrglobal.org/

ILEP Member, the Associazione Italiana Amici di Raoul Follereau, is planning to organise a workshop either side of this Congress.

For more information contact Dr Sunil Deepak sunil.deepak@aifo.it

For over four decades Dr Gopal has championed efforts to help eradicate leprosy and to help further the cause of those who are affected by this disease. He completed his university studies and earned a degree in economics whilst he was in a government leprosy hospital for two years being treated for leprosy. It was at the end of this time that he decided to stay at the hospital and help with the social rehabilitation of patients affected by leprosy. He established the hospital’s first social welfare and rehabilitation department. In 1993 Dr Gopal gained a PhD in rehabilitation from Ranchi University.

Dr Gopal is the International President of the International Association for Integration, Dignity and Economic Advancement (IDEA), which he helped to set up in 1994. This international advocacy and human rights organisation is working hard to end the effects of isolation, stigma and discrimination people affected by leprosy experience, which played a key role in the development of the United Nation’s Guidelines for the Elimination of Discrimination Against Persons Affected by Leprosy and Their Family Members.

Dr Gopal is the President of the National Forum of Persons Affected by Leprosy. In September 2011 he was part of a delegation that met with the Honourable President Smt. Pratibha Patil to urge the speedy implementation of recommendations outlined in the Action Taken Report tabled by the Petitions Committee in the House on 22nd November 2010, to empower persons affected by leprosy.

In communication with Mr Douglas Soutar, General Secretary of ILEP, Dr Gopal noted that he has been able to achieve what he has with the support of the ILEP Federation and by ILEP Members, particularly FAIRMED. Dr Gopal is quoted in The Hindu online on 26th January 2012 as saying “The government and NGOs should not dilute their leprosy eradication efforts as new leprosy cases are being reported every year.”

The Padma Awards will be distributed by the President of India at a function to be held at Rashtrapati Bhawan, their official residence, in March or April this year. 
 
This is not the first time Dr Gopal’s achievements have been recognised. He was awarded the Wellesley Bailey Award in 2001 and Foundation for the Encouragement of Social Contribution in 2004 by The Nippon Foundation.
 

Proclaimed an historic monument in 2009, part of the Losheng Sanatorium was torn down to make space for a maintenance depot for a new Rapid Transport System. However, during works cracks appeared in the walls of the remaining buildings and damage was caused to the grounds, so the constructions works relating to the maintenance depot were halted in November 2011. It is claimed that land subsidence threatens Losheng. A long-term construction safety assessment is being conducted, the conclusions of which are expected for March 2012.

Since 2004 residents of the sanitorium and supporters of the Losheng Youth Alliance have been involved in preservation efforts of Losheng, which was built in 1930 to quarantine persons with leprosy during the Japanese colonial era. The Losheng Youth Alliance consulted engineers over an inspection report last year commissioned by Taipei City’s Department for the Rapid Transit System, which indicated that the site was unsuitable for construction.

Campaigners have successfully convinced Aardman Animations that the scene in their film, that is to be released in March, could increase stigma and discrimination for millions of persons worldwide who are affected by leprosy.

Sarah Nancollas, Chief Executive of LEPRA Health in Action, is delighted with this result. She has shared with the ILEP Secretariat and ILEP Members the following extract from the statement Aardman Animations issued to the BBC:

“After reviewing the matter, we decided to change the scene out of respect and sensitivity for those who suffer from leprosy. The last thing anyone intended was to offend anyone and it is clear to us that the right way to proceed is to honour the efforts made by organisations like LEPRA and the World Health Organization to educate the public about this disease.”

Ms Nancollas tells ILEP Members that she does not know how the scene has been changed, or even cut, but that she has received assurance that it will not cause offence to persons affected by leprosy. On their campaign page LEPRA Health in Action have added the observation “… what has impressed our organisation most is the film makers comments about respect and sensitivity...”.

LEPRA Health in Action Let’s Fight the Prejudice Campaign: http://www.leprahealthinaction.org/index_pirates.php

This Update was released by the World Health Organization on the anniversary of the issue of the first report that tracked progress in tackling seventeen tropical diseases. Besides maps and figures for leprosy, these are also provided for other diseases for which ILEP Members are providing support such as Buruli ulcer and lymphatic filariasis.

Working to Overcome the Global Impact of Neglected Tropical Diseases Update 2011

First WHO Report on Neglected Tropical Diseases: 
http://whqlibdoc.who.int/publications/2010/9789241564090_eng.pdf

See WHO press release for more information:
http://www.who.int/mediacentre/news/notes/2012/rd_emro_20120117/en/index.html

Please see WHO news release:
http://www.who.int/mediacentre/news/releases/2012/dg_20120118/en/index.html#

Ms Nancollas said that they began campaigning on this issue because they have received many complaints from persons affected by leprosy in India and Brazil who have seen the trailer on-line to this upcoming animation and who have been greatly affected by the stigma associated with this disease. She stressed that she recognises that Aardman Animations have not been malicious in depicting this scene in The Pirates Band of Misfits.

LEPRA Health in Action is seeking an apology indicating the mistake that has been made. They hope that a gesture may be made towards persons affected by leprosy, who experience stigma and discrimination because of this disease, on World Leprosy Day Sunday 29th January 2012.

Screen writer Gideon Defoe said that they recognise leprosy is a much more culturally sensitive issue in other countries and they have no wish to offend anyone.

Look East news cast 17th January 2012 (available until approximately 18:00 GMT on 18th January 2012 on i-player):
http://www.bbc.co.uk/iplayer/episode/b019lr1m/Look_East_East_17_01_2012/

See also:

BBC News Bristol news item: http://www.bbc.co.uk/news/uk-england-bristol-16579015

News item in EADT Suffolk: http://www.eadt.co.uk/news/video_colchester_charity_at_centre_of_storm_over_film_trailer_by_aardman_animations_1_1179128

ILEP news item: http://www.ilep.org.uk/news-events/article/view/ilep-urges-film-makers-to-revise-portrayal-of-persons-affected-by-leprosy/568/

LEPRA Health in Action’s Let’s Fight the Prejudice page:

http://www.leprahealthinaction.org/index_pirates.php

“This stereotyped portrayal is both cruel and hugely offensive to the millions of persons affected by leprosy and risks perpetuating a negative and erroneous image in the minds of young film-goers around the world who will undoubtedly flock to see this latest Aardman production” says Mr Douglas Soutar, General Secretary of the International Federation of Anti-Leprosy Associations.

Leprosy remains an issue around the world with over 200,000 new cases diagnosed each year. Many millions, although treated and cured, suffer irreparable disabilities due to leprosy. These persons continue today to face discrimination, stigma and loss of dignity, which are perpetuated by the negative, stereotypical images which sadly still prevail among the ill-informed in our society.

Mr Soutar has written to Aardman urging them to treat these concerns seriously and to address this issue before the film is launched in March.

His voice and plea are not alone. Many others have been objecting to the offending scene, including Vagavathali Narsappa, president of the Society for Leprosy Affected People in Andhra Pradesh. Chief Executive of LEPRA Health in Action, Sarah Nancollas has written: “It is with deep regret that Aardman has decided to put comedy ahead of common sense and make this joke in such poor taste. Whilst we understand that film makers tread a fine line with many forms of discrimination, it appears little thought has been given to this particularly sensitive issue.” José Ramirez, who was treated for leprosy in Carville, USA, and who is today working as a social worker takes every opportunity to educate people that today leprosy is curable and that those who have it can live in mainstream society. He has written to Michelle Obama recommending that she not allow viewing of this film at the White House since she is well known for her campaigns against bullying. A British newspaper, The Independent, ran an article on the row on 13th January 2012 and BBC TV news has covered the issue. 

British actor, writer, and TV presenter, Stephen Fry has joined these voices on Monday 16th January 2012, with this comment to his thousands of Twitter followers:
“Cheap joke Aardman, leprosy does not cause your arm to fall off”.

Article in The Independent, 13th January 2012:
http://www.independent.co.uk/arts-entertainment/films/news/wallace-and-gromit-creators-in-leprosy-row-6289472.html#

LEPRA Health in Action’s Let’s Fight the Prejudice page:
http://www.leprahealthinaction.org/index_pirates.php