ADVISORY COMMITTEE DISCUSSES DRAFT PRINCIPLES AND GUIDELINES ON ELIMINATION OF DISCRIMINATION AGAINST PERSONS AFFECTED BY LEPROSY

The Human Rights Council Advisory Committee this morning discussed draft principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members.

Shigeki Sakamoto, Advisory Committee Expert, said the Secretariat had requested relevant actors to submit their views on the draft principles and guidelines. Many of the comments received were focused on the issue of isolation, noting that this was not a useful public measure, and had no relevance in the modern treatment of leprosy. There were many other valuable comments, including that since the current paragraph on discriminatory language was considered too vague, it should specifically mention objection to the use of the word "leper" rather than vague discriminatory language. The comments and views raised during this meeting would also be reflected in the final version of the draft set of principles and guidelines.

In the discussion on the draft principles and guidelines, speakers said, among other things, that if the guidelines suggested that persons affected by leprosy and their families should receive Government pensions, should that include social security too; the text required further improvement as new problems kept arising; it was up to States to identify those with leprosy living in isolation and to assist them to reintegrate, and a national mechanism that would set targets, coordinate and follow up on the matter and engage States and civil society would be preferable; and that some compensation or issue of transitional justice or reparation should be included in the guidelines. An Expert stressed that States should provide health care, free medication and the same healthcare provided for those with other diseases - the text needed to be made clearer as to what exactly was being offered. The State had a duty to put an end to this scourge, and the wording should therefore be stronger in this regard.

Speaking this morning were the following Advisory Committee Experts: Dheerujlall Seetulsingh, Emmanuel Decaux, Vladimir Kartashkin, Shiqiu Chen, Mona Zulficar, Chinsung Chung, Jose Antonio Bengoa Cabello, Bernards Andrews Nyamwaya Mudho and Halima Embarek Warzazi.

Also speaking were representatives of Japan and the International Federation of Anti-Leprosy Associations.

When the Advisory Committee reconvenes at 3 p.m. this afternoon, it will discuss the issue of missing persons.

Discussion on Draft Principles and Guidelines on Elimination of Discrimination against Persons Affected by Leprosy and their Family Members

SHIGEKI SAKAMOTO, Advisory Committee Expert, said the Advisory Committee adopted the "draft principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members" at its third meeting in August 2009 for consideration by the Human Rights Council. At the same time, a recommendation was also adopted by the Advisory Committee. During its twelfth session in October 2009, the Human Rights Council adopted the resolution 12/7 on elimination of discrimination against persons affected by leprosy and their family members. Pursuant to the aforementioned resolution, the Secretariat requested relevant actors to submit their views on the subject matter. Many of the comments received were focused on the issue of isolation in Article 1.2, and Article 2.1(a) of the guidelines, noting that this was not a useful public measure, and had no relevance in the modern treatment of leprosy. Many non-governmental organizations (NGOs) asked for the deletion of these paragraphs.

There were many other valuable comments, including changing wording, the inclusion of a new paragraph on the article on the "prohibition of victimisation, the amending of article 10 by adding a paragraph meaning "persons affected by leprosy and their family members should not be denied participation in any normal activities on grounds of having or having had leprosy". There were also many comments suggesting that since the current paragraph on discriminatory language was considered too vague, it should specifically mention objection to the use of the word "leper" rather than vague discriminatory language. In paragraph 3 of resolution 12/7, the Human Rights Council requested the Advisory Committee to finalise the draft set of principles and guidelines, taking into full consideration the views of relevant actors, for submission to the Council by its fifteenth session. The comments and views raised during this meeting would also be reflected in the final version of the draft set of principles and guidelines.

DHEERUJLALL SEETULSINGH, Advisory Committee Expert, asked if Mr. Sakamoto had a new draft on what he had just said. Firstly, regarding citizenship, he suggested stating that persons affected by leprosy and their families should not be deprived of that right. On isolation, which was mentioned in the second sentence, he noted that paragraph 5.2 referred to people and their families living in isolation. He raised the issue of whether the State should intervene or if such people ought to carry on living in isolation. Referring to occupation in paragraph 7, he said that some institutions had pointed out that encouraging employment could be emphasized. In principle 12.2 a, it was suggested that persons affected by leprosy and their families should receive Government pensions. He asked if that should include social security. Lastly, paragraph 14 suggested creating a committee to address the human rights of those affected by leprosy. He said he had no qualms about referring to it as such.

EMMANUEL DECAUX, Advisory Committee Expert, said a first version of the draft guidelines on the elimination of discrimination against persons affected by leprosy had been adopted at a previous session. The continuity on this very important topic, which had always been carried out by Japan, was very useful. This was an example of a different mode of drafting, with a Rapporteur in charge of the project. The Advisory Committee seemed to be shuttling between resolution 12/7 and other modes. The text needed to be adopted by the fifteenth session of the Human Rights Council, before which the Advisory Committee would have had another meeting, and could further discuss the text then. There appeared to be time for consideration, and this was a positive element, as was the consideration of all suggestions by stakeholders, who highlighted difficulties and other issues. There was a need for the process to develop naturally. However, there was a need to be coherent, and ensure the text was uniform and feasible. Progress should continue along these lines.

VLADIMIR KARTASHKIN, Advisory Committee Expert, said that all members had to be grateful to Mr. Sakamato, as on the whole, this was a very good document. Nonetheless, it required further improvement as new problems kept arising. Thus it was crucial to focus on how to improve the document. There was no reference to the rights of the child. Paragraph 1.1 could be improved. All the principles and guidelines had their own precise subject measures, calling upon States to take action. In that regard, paragraphs 8 and 9 were worded more generally and did not oblige States to take responsibility nor did they address persons affected by leprosy. Those two paragraphs were thus not specific or concrete enough. He was struck by paragraph 14. Paragraph 4 stated that nations should set up a body on measures relating to persons affected by leprosy without addressing the role of the international community in that regard. Without that, the value of the document would be lost even if it was not an international treaty. Some measures had to be sketched by the Advisory Committee. One such thing would be information on how to implement principles and guidelines on persons affected by leprosy. States could be asked to emphasize how persons affected by leprosy were enjoying a set of rights in line with documents that they were in the midst of submitting, to ensure that they complied with them. In that regard States would be requested to make a special mention of persons affected by leprosy. He asked Mr. Sakamato to incorporate such principles and guidelines.

SHIQIU CHEN, Advisory Committee Expert, said work had been done in many fora, which required improvement. Mr. Sakamoto was to be thanked for his introduction of the draft, and proposals for amendments. He had made an important contribution to this work. At the last session, the Advisory Committee had agreed on the draft principles and guidelines, believing at that time that they were already relatively complete, but, pursuant to resolution 12/7 of the Human Rights Council, the Committee was asked to submit the draft to all stakeholders, meaning Member States and international organizations, in order to ask for their opinion. This had been done by the Secretariat, and replies had been received, but there had not been much time, only three months, for this to happen. However, in this short time, some very useful replies had been received, and Mr. Sakamoto had commented upon these and had taken quite a few on board. This would help to work more effectively in improving the draft which was already prepared. According to resolution 12/7, a final draft had to be submitted to the fifteenth session of the Human Rights Council, and thus the Committee absolutely had to have a final draft at the next session - it was thus urgent for this work to be completed promptly. As regarded application of the principles and guidelines, in theory this only affected Governments, and a great many Governments had not replied to the request for comments. Before the next session of the Committee, a maximum number of replies should be received from stakeholders.

MONA ZULFICAR, Advisory Committee Expert, said on isolation, she agreed with Mr. Sakamoto’s decision to delete the sentence in principle 2 and guideline 1.1a. Instead, she suggested adding a footnote from the World Health Organization’s conclusion on that topic. From a healthcare perspective, it was such a crucial statement and thus a key part of the document. The document in 5.2 and 5.4 also addressed isolation. Considering this had been happening for a long time, she said it was up to States to identify those living in isolation and to assist them to reintegrate. It was essential to fight for the human rights of those affected by leprosy and to respect their right to live wherever they felt most comfortable, including hospitals. A balance had been struck on isolation as a real life experience, which still existed. Turning to guideline 14, which non-governmental organizations had addressed, she said it had to be reconsidered and redrafted. A national mechanism that would set targets, coordinate and follow up on the matter and engage States and civil society would be preferable. Thus, the document had to be redrafted to reflect that. She suggested disseminating information on how States were addressing the issue, in a bid to eliminate the stigma attached to it and to gage how leprosy was being dealt with.

CHINSUNG CHUNG, Advisory Committee Expert, said she wished to propose two points: to continue discussing the social support and integration location matters and whether to put the issue of compensation to those who were already victimised by isolation by the Government. There were various laws sought by those affected with leprosy who were victimised by isolation - the situation was very hard in some areas. Some compensation or issue of transitional justice or reparation should be included in the guidelines. The second issue was that in paragraph seven on occupation, this was somewhat weak and it should say that States should prohibit any discrimination against the persons affected by leprosy in terms of employment and promotion, or something similar.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Vice-Chairperson, said the consultation process had been very interesting. Views had been received by email, and he agreed completely that this document clearly signified the aim of eliminating discrimination against those affected by leprosy. The document needed to clearly state this aim. The second part of the second article should be deleted - isolation was the central issue. This subject area was complex, and this complexity was seen in paragraph 5.4 of the guidelines, which was ambiguous, as, in essence, this paragraph enabled isolation. Persons affected by leprosy and their families were once forcibly isolated by Governments, and had to live out their lives in the State institutions which became their homes. If these sites of isolation were retained, then logically other people would continue to come to these places and live there, and no end would be put to these hellish places which were some of the worst places in the world. A progressive end should be put to these sites, and text should be included to that effect in the draft. A clear balance had to be found on this topic, and the text should state clearly that an end should be put to these places, as it was a form of discrimination.

BERNARDS ANDREWS NYAMWAYA MUDHO, Advisory Committee Expert, acknowledged all the good work that had been done on this topic, stressing that the focus should now be on listening to the views of stakeholders. In that regard, he noted that Mr. Sakamoto had kindly gone through those in detail. Nonetheless, considering the number of States, responses so far had been quite thin. Although he acknowledged comments on improving the principles and guidelines of the draft, in terms of suggestions, he urged for a more forward looking approach by Governments, to allow them to respond to the directive of the Council. The World Health Organization’s opinion on isolation stated that it did not pose any contagious health risks. He expressed his gratitude to Mr. Sakamoto’s work.

HALIMA EMBAREK WARZAZI, Advisory Committee Chairperson, said she had read the text very carefully, and felt that some articles needed to be strengthened. Mr. Sakamoto was to be thanked for this extraordinary work, and congratulated. On paragraph three of the draft, on women and children and other vulnerable groups, in the introduction of this paragraph, 3.1, it would be stronger if there was a deletion that "States should recognise that" - instead, there should be an affirmation that in many societies leprosy had a negative presence, and States should therefore pay special attention to this issue. In paragraph five, on living in the community and housing, it was not clear exactly which housing rights people should have, and this paragraph should be clarified and rights enumerated. In paragraph six, on participation in political life, there was no need for States to be asked to ensure voting rights - this was an obligation that States had to live up to and ensure that these people enjoyed their voting rights, and they should not have to need to be encouraged to do so. In paragraph eleven, States should provide health care, free medication and the same healthcare provided for those with other diseases - the text needed to be made clearer as to what exactly was being offered. The State had a duty to put an end to this scourge, and the wording should therefore be stronger in this regard.

DOUGLAS SOUTAR, speaking on behalf of International Federation of Anti-Leprosy Associations, said that they all welcomed the consultative process that had been undertaken in this process. He reiterated that repetition was sometimes beneficial to some key elements that the World Health Organization and other bodies had addressed. There was no health or human rights justification for isolating those affected by leprosy. It was crucial for States to be encouraged to prohibit the use of discriminatory terminology including the term ‘leper’. People were still affected by such language. He commented on the issue of language, referring to the International Federation’s suggestion that more obligatory language should be used. Although they did not want to obstruct measures to pass the resolution in September, the language could oblige States to act more proactively to address and to eliminate leprosy.

AKIO ISOMATA (Japan) said Japan wished to express its sincere appreciation to the members of the Advisory Committee for their dedicated work in producing in a timely manner the draft principles and guidelines. After the submission of the draft to the Human Rights Council by the Advisory Committee in September last year, Japan, as a leading sponsor of resolution 8/13 received a variety of comments by stakeholders, many of which were conducive to further improvement of the draft. Human Rights Council Resolution 12/7 was adopted as an attempt to ensure greater procedural transparency. Whilst taking into account that the draft was the result of in-depth consideration by the Committee, it was only natural to ask the Committee to review the views of different actors, and reflect them as appropriate in the text. Professor Sakamoto had already started to work on these views and comments, and Members of the Committee continued to be supportive in improving the draft. Japan was appreciative of the understanding of the Committee to consider these views and comments further. Japan fully supported the work of the Committee towards the finalisation of the draft, which should be adopted by the Human Rights Council in the near future, with full support by all stakeholders.

JOSE ANTONIO BENGOACABELLO, Advisory Committee Vice-Chairperson, said that in the Spanish version of the draft in 11.1 and 11.3, there was some confusion on providing free medication, which was after all, a central point. Otherwise, eliminating the scourge of leprosy would become very difficult. It occurred in very poor areas and was thus clearly linked with poverty. Therefore, the text should mention clearly that States had an obligation to provide free medication to those affected by leprosy. That would make it stronger and clearer, by reflecting what the Committee desired. The set of principles and guidelines was historic as it noted the need to eliminate discriminatory practices.

SHIGEKI SAKAMOTO, Advisory Committee Expert, in concluding remarks, said he had received eleven suggestions and views of high quality from relevant stakeholders, and sincerely appreciated this cooperation. Through an extensive exchange of views, he had acquired many valuable ideas to revise the draft set of principles and guidelines, which would be reflected in the final draft. Of course, it may not be easy to revise a draft set of principles and guidelines to make them satisfactory to every stakeholder, but Mr. Sakamoto was fuelled by the many valuable specialised advice and comments from the relevant stakeholders, and by introducing these ideas to the text, the human rights situation of the persons affected by leprosy and their family members would surely be improved. In preparing the final draft set of principles and guidelines, there was a need to harmonise two different requests: to maintain integrity of the draft adopted by the Advisory Committee in the last session; and to keep enough flexibility to reflect as many comments and suggestions as possible in the revised draft. He hoped to submit the revised version to the Committee Members as soon as possible, try to establish consensus among them during the inter-sessional period, and finalise a draft for the Committee meeting next August.

For use of the information media; not an official record

AC10/004E