A/HRC/35/38
majority of the responses from States came from countries in which leprosy was not
endemic.
13.
Two members of the drafting group, Mr. Okafor and Mr. Soh, participated in the
international conference entitled “Towards holistic care for people with Hansen’s disease,
respectful of their dignity”, held in Rome in June 2016,6 where, they had the opportunity to
discuss and hear, first hand, the testimonies of persons affected by leprosy and obtained
relevant feedback on the measures that they expected their Governments to take for the
effective implementation of the principles and guidelines. The information gathered at the
conference is reflected in the present report.
II. Summary of the contents and status of the principles and
guidelines
A.
Summary of the contents of the principles and guidelines
14.
The principles and guidelines for the elimination of discrimination against persons
affected by leprosy and their family members 7 consist of two parts. The first part,
“Principles”, recognizes the basic human rights of persons affected by leprosy and their
family members, which are already enshrined in the Universal Declaration of Human
Rights and in other relevant international human rights instruments such as the International
Covenant on Economic, Social and Cultural Rights, the International Covenant on Civil and
Political Rights and the Convention on the Rights of Persons with Disabilities. The second
part, “Guidelines”, translates the principles into concrete action and provides for States’
responsibility to respect, promote, protect and ensure the full realization of all human rights
for all persons affected by leprosy and their family members. The principles and guidelines
are designed to meet the specific needs of persons affected by leprosy and their family
members and ensure them the rights that are or may be denied to them in countries globally.
15.
Principle 1 reaffirms the right of persons affected by leprosy and their family
members to be treated with dignity and their entitlement to all the rights specified in
international human rights instruments. Principle 2 provides for non-discrimination against
persons affected by leprosy and their family members on the grounds of having or having
had leprosy. Principle 3 enunciates that persons affected by leprosy and their family
members have the same rights as everyone else with respect to marriage, family and
parenthood, while principles 4 and 5 stipulate that those affected by leprosy have the same
rights as everyone else to full citizenship, identity documents and participation in public
and political life. Principle 6 provides for the right to employment on an equal basis with
others and the right to work in an inclusive environment, while principle 7 provides for the
right to education and other training. Principle 8 stipulates that persons affected by leprosy
and their family members are entitled to the fullest development of their human potential
and to the full realization of their dignity and self-worth, while principle 9 provides for
persons affected by leprosy and their family members to have the right to active
involvement in decision-making processes regarding policies and programmes that directly
concern their lives.
16.
The “Guidelines” set out the actions that States should take to implement the
principles and is divided into 14 sections. Guideline 1 sets out the general obligations of
States in relation to the realization and protection of the rights of persons affected by
6
7
4
Netherlands Leprosy Relief-Mekong (Viet Nam), The Leprosy Mission-England and Wales, The
Leprosy Mission-Chad, IDEA-Nepal, Marcial Escobar on behalf of an NGO (Paraguay), International
Federation of Anti-Leprosy Associations (ILEP) (Paraguay), The German Leprosy and Tuberculosis
Relief Association (DAHW) (Sierra Leone), Persatuan Mandiri Kusta (PerMaTa)-National
(Indonesia), PerMaTa-South Sulawesi (Indonesia), YPPCK Leprosy and Disability Care Foundation
Java (Indonesia) and SOLE (Angola).
The conference was jointly organized by the Pontifical Council for Health Care Workers, Good
Samaritan Foundation and the Nippon Foundation, in cooperation with the Foundation Raoul
Follereau, the Sovereign Order of Malta and Sasakawa Memorial Health Foundation.
A/HRC/15/30, annex.
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