News Release
For immediate release
The UN takes further steps to end leprosy-related discrimination

Meetings at the United Nations in January 2009 made progress in developing strategies to tackle the worldwide problem of discrimination against people affected by leprosy.
 
A consultation in Geneva on 15 January held by the Office of the High Commissioner for Human Rights (OHCHR) was attended by government representatives, NGOs, scientists, medical experts and representatives of people affected by leprosy. This wide variety of groups exchanged views on the best way of tackling stigma. Eric Chollet, from TLM Switzerland, and Sian Higgins from TLM England and Wales, represented The Leprosy Mission. And Douglas Soutar, ILEP’s general secretary was one of the panellists at this meeting.
 
In his presentation, Mr Soutar said that ‘the human rights that pertain to people affected by leprosy should not be seen as relating to only health or disability. Since people affected by leprosy have the same rights as all people, specific practical strategies would also be needed to promote the obligations of States to respect, protect, fulfil and promote the rights enshrined in other existing covenants and conventions, such as that pertaining to the rights of people with disabilities.’  Mr Soutar also encouraged people to carefully consider the language used when talking about leprosy-affected people, and to avoid terms such as ‘suffer’ or ‘victim’.
 
Also among those attending were people who had first-hand experience of the disease. The representative of the Republic of Korea, Lim Doo-Sung,
who had leprosy as a young man and is now a member of the Korean National Assembly, said that in Korea, people affected by leprosy are still treated as patients, even after they are cured. He said that they are more affected by social issues than the disease itself.
 
Ms Zilda Borges from Brazil was one of the representatives from the International Association for Integration, Dignity and Economic Empowerment (IDEA). She won the Wellesley Bailey Award in 2005 for her courage in overcoming leprosy. She spoke on behalf of women affected by leprosy and said that many have borne discrimination in silence. Some do not even have official documents or citizenship.
 
The OHCHR has collected information from various countries about anti-discriminatory practices in operation today. In some countries, leprosy-affected people are still forcibly quarantined, under the law, in isolated hospitals or colonies.
 
Since the UN adopted, on 18 June 2008, Resolution 8/13: ‘Elimination of discrimination against persons affected by leprosy and their family members’, 24 governments have taken steps to eliminate discrimination towards leprosy-affected people.
 
‘We wholeheartedly support these calls for an end to the discrimination experienced by leprosy-affected people,’ said Geoff Warne, General Director of The Leprosy Mission International. ‘It is our hope that, as we work with the UN and other organisations around the world, we will see an end to discriminatory laws and practices and a significant change in the public perception of leprosy in this generation.’
 
On 28 January 2009 the United Nations’ Human Rights Council Advisory Committee met in Geneva to discuss a paper drafted by Mr Shigeki Sakamoto, the Advisory Committee expert, outlining a set of principles and guidelines on how to eliminate discrimination against leprosy-affected people and their families.
 
Mr Sakamoto’s paper recommended that: States should abolish all policies and practices that discriminate directly or indirectly against people affected by leprosy; States should develop public awareness strategies and health care campaigns; they should provide compensation for people who have suffered losses as a result of compulsory segregation; and children affected by leprosy should have good access to education and the opportunity to develop skills. 
 
As a result of the meeting on 28 January the Advisory Committee recommended that the Human Rights Council should take certain measures, including: endorsing all the conclusions set out in Mr Sakamoto’s paper; to request that Mr Sakamoto formulate a draft set of principles and guidelines for the elimination of discrimination against leprosy-affected people and their families; and to provide him with all the assistance necessary to enable him to accomplish this task. 
 
Mr Sakamoto’s draft set of principles will be presented to OHCHR in September 2009.
 
Note to editors:
About The Leprosy Mission
The Leprosy Mission is an international Christian organisation working toward the eradication of the causes and consequences of leprosy.
 
We are a global network of organisations active in over 50 countries, supporting programmes in around 30 countries where leprosy is still a chronic disease and a social problem. TLM has served people affected by leprosy since 1874.
 
About Leprosy
Almost four million people around the world live with the permanent effects of leprosy.  Also called Hansen’s Disease, leprosy attacks nerves that are located near the cooler parts of the body - extremities such as the hands, feet and face are especially vulnerable.  The most common symptom is
discoloured patches of skin that lose their sensitivity.  If left untreated, leprosy can cause the fingers and toes to claw inward and the eyes to lose their ability to blink, therefore causing blindness and recurring ulcers and infections on various parts of the body.  These ulcers and infections in the hands and feet develop when cuts, bruises and burns are ignored due to a lack of sensation and secondary infections occur.
 
A combination of three separate medications (Dapsone, Clofazamine and Rifampicin), known as Multi-Drug Therapy, kills the bacteria that cause leprosy.  On average, the cost to bring the cure and necessary after-cure treatment to a patient is only about £165.  This sum covers education, distribution of medication, surgery, rehabilitation and essential ongoing support. 
 
Today, in Asia, Africa and Latin America, leprosy is still an active health and social problem.  For generations people have feared leprosy, attaching severe social stigma to people who have the disease.  Thousands of patients are rejected by their families and friends and ostracized by the communities in which they live.  The age-old prejudice associated with the disease continues to devastate those who are afflicted with leprosy.  Poverty and lack of medical care compound the problems.
 
Full information on leprosy and The Leprosy Mission International is at www.leprosymission.org