A/HRC/35/38
their family members. The efforts made to date have often been fragmented and
limited to certain government sectors, such as Ministries of Health or national human
rights institutions, and not taken up in a holistic or coordinated manner that involve
other actors in society, including persons affected by leprosy and their family
members. Indeed, owing to a lack of effective and concerted State and societal action
to implement the principles and guidelines, various forms of discrimination that
impede the enjoyment of their fundamental human rights by persons affected by
leprosy and their family members persist in many parts of the world.
68.
Although there is a certain degree of awareness of the principles and guidelines
in many countries, such awareness does not seem to be sufficiently disseminated
within all sectors of government at all levels or among the population at large. The
principles and guidelines are also not being used as an authority for combating stigma
and discrimination against persons affected by leprosy and their family members.
69.
In the majority of countries, there is no comprehensive strategy or action plan
or policy framework as well as a designated body to follow up, monitor and report on
the measures taken to implement the principles and guidelines. However, in some
countries, one or more government institutions, such as the Ministry of Health or the
national human rights institution, have taken fragmented actions to follow up the
implementation of some aspects of the principles and guidelines. Moreover, full and
meaningful participation of persons affected by leprosy and their family members at
all levels of the decision-making process and in activities on matters that directly or
indirectly impact their lives, including in following up the effective implementation of
the principles and guidelines, seems to be lacking in most countries.
70.
Although no specific discriminatory policies and laws were pinpointed, such
policies and laws still exist in many countries and they should be reviewed and
modified or repealed as necessary. Such policies and laws are not limited to leprosyendemic countries, but also exist in non-endemic countries where leprosy is considered
very rare and a “forgotten” disease. Affirmative policies and laws that provide
specifically for measures to eliminate stigma and discrimination against persons
affected by leprosy and their family members and that promote social inclusion of
such persons in line with the principles and guidelines are lacking in most countries.
71.
Inappropriate and offensive language is still used to refer to persons affected by
leprosy in both leprosy-endemic and non-endemic countries. This is sometimes
perpetuated by the media and in popular culture in some countries.
72.
At the international level, there is a clear absence of a specific mechanism
within the human rights machinery to follow up, monitor and report on measures
taken and progress made towards the effective implementation of the principles and
guidelines. The importance of establishing such a mechanism at the international
level, preferably within the human rights system, to follow up, monitor and report on
measures taken by States towards the effective and full implementation of the
principles and guidelines was highlighted.
73.
Based on the above findings, the following recommendations are proposed for
the wider dissemination and effective implementation of the principles and guidelines
for the elimination of discrimination against persons affected by leprosy and their
family members.
A.
At the national level
74.
States and relevant government institutions at all levels should strengthen,
promote and facilitate awareness-raising campaigns and widely disseminate the
principles and guidelines as the main benchmark in the fight to eliminate stigma and
discrimination against persons affected by leprosy and their family members. This
should be done in collaboration with all relevant actors, such as organizations
representing persons affected by leprosy and their family members, medical
practitioners, educators, religious and community leaders, public figures, opinion
makers and the media. In that respect, sustained and proactive public education and
awareness campaigns should be conducted in order to dispel persisting myths and
superstitions about leprosy, including in countries where leprosy is not a prominent
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