HUMAN RIGHTS COUNCIL ADVISORY COMMITTEE CONTINUES DISCUSSION ON ELIMINATION OF DISCRIMINATION AGAINST PERSONS AFFECTED BY LEPROSY

The Human Rights Council Advisory Committee this afternoon continued its work on the elaboration of draft guidelines and principles on the elimination of discrimination against persons affected by leprosy and members of their families, under item three of its agenda, namely requests to the Advisory Committee by the Human Rights Council. The Committee also briefly reopened the discussion on the draft guidelines on best practices with regard to missing persons.

The draft guidelines and principles on the elimination of discrimination against persons affected by leprosy and members of their families were introduced by Committee Expert Shigeki Sakamoto, who said the small Drafting Group carefully reviewed the revised principles and guidelines, taking into consideration the well-considered suggestions made by distinguished colleagues during the morning and afternoon meetings on Monday.

The Committee then discussed the proposed text, suggesting, among other things, that the text could go even further on the issue of positive action. Another suggestion was that the document ought to state that States, in a given period of time, must establish plans and programmes to eradicate leper hospitals, communities, or colonies. If this was not stated boldly in the text, then the Committee was tacitly ensuring that these leper colonies continued to exist throughout the world. The Committee should try to apply qualitative terminology that pertained to all those suffering from poverty.

Speakers said it should also be assessed whether the integration into societies was the eventual will of those persons affected by leprosy and their families, who chose to stay in hospitals and communities. Another problem was what to do with communities that did not accept persons affected by leprosy, and how to change their views. Several speakers pointed out, however, that the abolishment of leprosariums, hospitals, camps and colonies was a growing trend in many areas. A range of other suggestions mainly concerned textual amendments, insertions, and clarifications, including a suggested insertion of a reference to the importance of international cooperation.

Speaking on missing persons was the representative of Honduras. Also speaking was the Association of World Citizens. Experts Wolfgang Stefan Heinz and Purificacion V. Quisumbing also took the floor.

Speaking on persons affected by leprosy were Latif Huseynov, José Antonia Bengoa Cabello, Emmanuel Decaux, Mona Zulficar, Dheerujlall Seetulsingh, Alfred Ntunduguru Karokora, and Halima Embarek Warzazi. Also speaking were the representatives of Japan, the Philippines, Indonesia, and Brazil. A representative of the Association of World Citizens also took the floor.

The next meeting of the Committee will be at 10 a.m. on Thursday 5 August, when it will continue its consideration of items under requests to the Advisory Committee by the Human Rights Council, including the right of peoples to peace, and enhancement of international cooperation in the field of human rights. The issue of the text of the draft guidelines on persons affected by leprosy may also be taken up.

Discussion on Missing Persons

ROBERTO FLORES BERMUDEZ (Honduras) said Honduras wished to thank the Drafting Group that prepared the document on missing persons. It was appropriate to consider and review what progress could be made to promote and review human rights. At the moment, there were no cases in Honduras of missing persons and enforced disappearances, but it was lamentable that such cases continued to occur in many areas of the world. As far as the Truth Commissions were involved, Honduras had established such a Commission last year, and its report would be published by the end of the year. This was an example of the trust that could be found to overcome political crises and shape a future vision for the world.

GENEVIEVE JOURDAN, of Association of World Citizens, had a question on boat people and how families could receive news and information on the whereabouts of their relatives. This was a situation of people on boats who had gone missing. There was a day devoted to the disappeared and there was some mention that boat people might be included in this report. The United Nations High Commissioner for Refugees said that they would not deal with this particular issue.

WOLFGANG STEFAN HEINZ, Advisory Committee Vice-Chairperson, responding to these issues, said it was important to clarify that the Drafting Group was working on a conceptual document on best practices on missing persons in armed conflict, and he doubted whether the case just mentioned, although an important humanitarian case, was relevant. The issue was not missing persons in the sea, but missing persons in armed conflict. The Advisory Committee did not deal with country situations or specific cases, but with topics, and the speaker should contact the relevant international organizations. The Advisory Committee could not react quickly to solve the problem raised.

PURIFICACION V. QUISUMBING, Advisory Committee Chairperson, added that the Advisory Committee was guided by the fact that country situations were not within the mandate of its work. However, there were situations where practices in different countries and situations could come into play in a study. This was why it was important to have some contributions from those who were dealing with this kind of situation in their country or community. The Advisory Committee was very strict about not going into areas which the Council had blocked off.


Discussion on Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members

SHIGEKI SAKAMOTO, Advisory Committee Expert, said the small Drafting Group carefully reviewed the revised principles and guidelines, taking into consideration the well-considered suggestions made by distinguished colleagues during the morning and afternoon meetings on Monday. The introduction had been deleted as such an introduction was not fit for the principles and guidelines. Among a number of changes were the following: in article five, the words "equal rights" had been changed to "on an equal basis with others"; in article six, the words "to be treated equally" had been changed to "on an equal basis with others"; article nine had been tuned to say "Persons affected by leprosy and their family members had the right and should be actively involved in decision-making processes". In the guidelines, in article 1.2, a sharp distinction had been made between the Universal Declaration of Human Rights and other international human rights instruments, as the former was not legally binding on individual States in a strict sense, while the latter was legally binding on the parties to international human rights instruments. In article six, the expression "enjoy the voting rights on an equal basis with others" had been adopted instead of "enjoy the equal voting rights". In article thirteen, a new sentence had been added as follows: "affirming, inter alia, that leprosy is curable and should not be used for discrimination against persons affected by leprosy and their family members".

LATIF HUSEYNOV, Advisory Committee Expert, thanked Mr. Sakamoto for his hard work and said that he agreed with all the amendments made, which had served to significantly improve the most recent version of the text. He added that he had sent in several other amendments but recognized that they were probably sent in late and were thus not included in this most recent draft. More specifically, in paragraph 2 for instance, he was not entirely satisfied with the phrase persons affected by leprosy should not be “deprived of their rights” for having or having had leprosy. He felt that it would be stronger to say persons affected by leprosy should not be “discriminated against” on the basis of leprosy. Finally, while he recognized that the document did provide for certain specific measures to be taken by States to ensure that a certain degree of equality was given to people affected by leprosy, he felt the text could go even further on the issue of positive action.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Expert, said he agreed with the tabled amendments, except for one - he did not agree that the Committee would be judged by whether the document was good or incomplete. First, he supported, as he always had, Mr. Sakamoto and his approach, and thus what he was about to say was not against Mr. Sakamoto, who had done excellent work, and the Committee was just trying to make that work even better. The issue he wished to refer to was under article 5.4, which had been amended, but was still not specific enough in one particular regard. The document ought to state that States, in a given period of time, must establish plans and programmes to eradicate leper hospitals, communities, or colonies. If this was not stated boldly in the text, then the Committee was tacitly ensuring that these leper colonies continued to exist throughout the world. If the Committee did not state that States must have an eradication programme in place, with a reasonable timetable, then these leper communities would continue to exist ad infinitum, so changes had to be made to make the document effective, and not a dead letter.

EMMANUEL DECAUX, Advisory Committee Expert, said that while he had a number of comments, he would not share them now, in the hopes of not wasting too much time. Turning to paragraph 12 on the section on guidelines, he was somewhat disturbed by the repeated use of the statement “below the poverty line”. His feeling was that the Committee should not use such a quantitative expression and should try to apply qualitative terminology that pertained to all those suffering from poverty.

AKIO ISOMATA (Japan) said Japan wanted to make provisional comments, as it had not had time to study the text. As for the newly-inserted end to paragraph 5.4, Japan had two comments: first, it should be assessed whether the integration into societies was the eventual will of those persons affected by leprosy and their families, who chose to stay in hospitals and communities; second there should be a study between Governments on how to promote the integration of the residents of such places. The issue of integration was a very sensitive issue for those affected by leprosy, local communities, and States. With the finalisation of these principles and guidelines at the level of the Advisory Committee, Japan would initiate the necessary process for their consideration at the Council level.

LATIF HUSEYNOV, Advisory Committee Expert, repeated his earlier point on paragraph two, to delete the term “deprived of their rights”. In the guidelines, in paragraph 1, the statement “States should promote the full realization…” should be changed to “States should promote, protect and ensure the full realization”. He proposed a number of other small linguistic changes and amendments, which were more consistent with international human rights discourse. For example, in paragraph 3.1, he proposed changing the term “the vulnerable” with either “vulnerable people” or “vulnerable groups”. Finally, he repeated that the concept of specific measures or positive action could also be introduced as a separate chapter.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Expert, said he had a suggestion for a change in language in paragraph 5.4. The text said "States should, however, improve living conditions in those leprosariums and hospitals, and should also design, promote and implement plans for" and then Mr. Bengoa added "progressive elimination of those places" following which the text would remain unchanged, namely "and integration of the residents of such places". Following the suggestion of Japan, the phrase "taking into account the participation and opinion of those families" could be added following the above phrase.

DHEERUJLALL SEETULSINGH, Advisory Committee Vice-Chairperson, said most of the suggestions made were to improve drafting - and this was like silver, it could go on and on and the text would become ever shinier. Most of the suggestions could be taken on board, except maybe for the suggestion to include positive discrimination, suggested by Mr. Huseynov, although he should come up with a text in this regard. It was for the Advisory Committee to agree on the proposed amendments, in particular the suggested ones by Mr. Bengoa, which were more substantive than others. Once this was agreed, then the text could be sent to the Council, where Japan would have the opportunity to further debate the issue.

SHIGEKI SAKAMOTO, Advisory Committee Expert, said that he had fully considered and accepted the proposals made by Latif Huseynov. Furthermore, with regard to article 5.4, he accepted the proposed amendments, including the suggestions made by the Japanese delegation. The purpose of these last changes was to respect the will of those affected by leprosy.

MONA ZULFICAR, Advisory Committee Expert, said with regard to the proposed amendments, these could be accepted. Persons with leprosy had the same rights as all others, to vote, participate in the community, and to enjoy public life. The Committee was sensitive to the challenges facing these persons who had suffered so much, and were living in isolated conditions with their families, who were also isolated. The language urged Governments to help these people, if they did not wish to leave their homes, with better conditions and gradual integration, all the while remaining sensitive to their needs. If there was such language, then there could be no difference of opinion on the good intentions and harmony that the Committee was putting forward for the whole world and the Human Rights Council to approve. This phasing-out had to be gradual - the wishes of those with and affected by leprosy had to be respected. Thus, the text should be: "Without prejudice to the foregoing, States should improve living conditions in those leprosariums and hospitals, and should also design, promote and implement plans for the gradual integration of the residents of such places in the community and for the gradual phasing-out of such leprosariums and hospitals."

LATIF HUSEYNOV, Advisory Committee Expert, thanked Mr. Sakamoto for having taken on board most of his amendments, with the exception of two proposals, which he had withdrawn and were mostly of a technical nature. He also suggested that the reintegration of leprosy victims should not be left up to the victims themselves and States should generally endeavour to phase out leprosy hospitals and to help in the social integration of those affected by leprosy.

DHEERUJLALL SEETULSINGH, Advisory Committee Vice-Chairperson, said some suggestions had been made which Mr. Sakamoto had not had time to take on board, and these drafting improvements would really improve the text. Mr. Decaux had suggested moving "on an equal basis with others" further up the text. The Advisory Committee needed to help Mr. Sakamoto to improve the text, without changing the substance. The Advisory Committee should send a document which the Council could accept without making any amendments or debating it, this was why it should be very sure about what happened to paragraph 5.4, and should seek the views of Japan and whether they approved the text before it went ahead. Also, some members could object to the term of "disease" used for leprosy in 5.2 and 5.3. Mr. Seetulsingh was hoping for a sort of perfect text which could go to the Council, where it would be introduced and supported by the delegations who had initiated the project.

MONA ZULFICAR, Advisory Committee Expert, redrafted the final sentence of paragraph 5.4 in order to take into consideration the suggestions made by some members of the Advisory Committee. Integration and phasing out both implied that people were being moved from where they lived and she wanted to ensure that this was not against the will of those affected by leprosy. Finally, the words “without prejudice to the foregoing” were removed and the sentence was changed to “With due regard to the persons, States should improve living conditions in those leprosariums and hospitals, and should also design, promote and implement plans for the gradual integration of the residents of such places in the community and for the gradual phasing-out of such leprosariums and hospitals.”

ALFRED KAROKORA, Advisory Committee Expert, said before he came to this session, he met a doctor who had worked in leprosy and tuberculosis for more than 30 years, who told him leprosy was a bacterial disease, and once a person affected by the disease was treated for more than six months, then he or she could not transmit that disease. He had been told that most camps in Uganda had been closed, as the disease had been eliminated. A person who had been treated was no longer a leper - they had been treated and were disease-free. In Uganda now there were only 345 cases of lepers. There was still a stigma surrounding the disease which sometimes impeded people from coming forward for treatment. But this did not mean that the Committee should stop with what it was doing - it should submit its report and recommendations to the World Health Organization, and seek their opinion as to the disease, although their attention should be, Mr. Karokora thought, focused more on HIV/AIDS, which was more deadly. But there was no longer a leprosy problem - the treatment was known. It was India and Japan where leprosy was still discussed and where victims were discriminated against, but in Uganda, where there had been leper camps, these had been closed.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Expert, said that he agreed with all the amendments that were made to the text. Moreover, he also said that he was delighted to hear that all this progress was occurring in Uganda. Uganda was doing exactly what the Advisory Committee would be requesting before they had even formally requested it.

HALIMA EMBAREK WARZAZI, Advisory Committee Expert, said Mr. Sakamoto was going to take the floor to indicate what should be the final text. A final version of the text needed to be seen as soon as possible - the Committee could not spend all night discussing it. It would be a good idea to conclude this discussion now - if there was any fine-tuning still to be done, it should be done in italics, so that it was clear that there was no agreement on these words, and the Committee should move on to adopt it.

JESUS ENRIQUE G. GARCIA (Philippines) said on paragraph 5.4, the Philippines shared the views of Japan on this article, but noted the gradual abolishment of such leprosariums and hospitals was a growing trend, supported by the Philippines, although there was a problem of capacity. Further, another problem was what to do with communities that did not accept persons affected by leprosy, and how to change their views. Thus, the Philippines suggested the inclusion of the phrase "where applicable" at the end of the paragraph, when referring to the "gradual phasing-out". Dialogue was always good.

KAMAPRADIPTA ISNOMO (Indonesia) congratulated the Chairperson on her new appointment and also for the work of Mr. Sakamoto. Indonesia wished to make a preliminary comment on paragraph 5.4. While it supported the notion that leprosariums should be gradually phased out, the ability to do so would vary from country to country and would depend largely on the degree of economic development of States. There should therefore be a certain amount of flexibility in the implementation of such objectives.

AKIO ISOMATA (Japan) said Japan sincerely appreciated the efforts of the Committee to accommodate the concerns it had raised with regard to paragraph 5.4, and wished to make it clear that Japan did understand the rationale of the newly-inserted language, and was very thankful for the amendments by the Committee to try to deal with Japan's concerns. Japan humbly suggested the addition of "where applicable" in the last sentence of the amended paragraph, so that the relevant Governments would be able to take into account different legal or whatever situations they were in. It was the prerogative of the Committee how to formulate the paragraph, however. Japan wished to consider the positive contributions and discussion held today when moving forward on this in the Council.

JOAO ERNESTO CHRISTOFOLO (Brazil) said that Brazil was comfortable with the language of the report but that it would like to see some reference at the end of the text to the importance of international cooperation on this particular issue. Given some of the points raised on the capacity of certain countries to implement such reforms, the role of international cooperation was all the more important.

GENEVIEVE JOURDAN, of Association of World Citizens, said the Committee had before it a very good text, but the Association of World Citizens was terribly sorry to see that it only covered leprosy. The Committee had begun with the wrong issue - wrong in that it was too limiting. The scope should have been broadened to other diseases such as AIDS or tuberculosis, the sufferers of which were treated as pariahs or even killed in many areas of the world. There should be a dialogue with the Council, telling them that the scope should be extended to the sufferers of other diseases, their families and communities. This was a good text, but it should truly be useful to the whole community, and reach the people who truly needed it.

SHIGEKI SAKAMOTO, Advisory Committee Expert, in his concluding remarks, appreciated the inclusive debate on the amendments made to paragraph 5.4 and was happy with the final version of the last sentence. With regard to other articles in the text, he agreed to review and incorporate the proposals made by the Advisory Committee Experts.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Expert, said the words "when applicable" was not in the text as had been seen - it was a proposal from Japan, and was not in the original text. He did not agree with the inclusion of these words. He suggested googling the statistics for leprosy per country, and said there were millions of people living in leprosariums and colonies. He was not going to accept a text that was so weak and trod so gingerly in tackling these issues, saying "if possible", "where applicable", etc. He hoped for a vote on a serious, clear text in this regard. He apologised, but said he was here to speak his mind and work conscientiously.

HALIMA EMBAREK WARZAZI, Advisory Committee Expert, said that the Experts had taken a break earlier in the session with the specific intention of finding a consensus. Since they had done so, she said that if there were more amendments or modifications to be proposed, they should be suggested at a later stage, perhaps on Friday before the report was to be adopted.


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AC10/016E