A/HRC/44/46
may be necessary, in some contexts, to elaborate specific policies and/or programmes
within a multisectoral approach.
6.
Methodologically, the Special Rapporteur conducted extensive bibliographical
research and analysis of international standards (see annex) and of the work of the human
rights mechanisms, such as the treaty bodies and the special procedures, and the relevant
United Nations agencies and organizations. Good and best practices regarding leprosy and
those from adjacent human rights fields were also examined. Governments and civil society
organizations1 were consulted in order to learn from their positive experiences. Responses
to a call for input were received from Brazil, Cambodia, Chad, Cyprus, the Dominican
Republic, Ecuador, India, Japan, Lebanon, Mauritius, Mexico, Mozambique, Myanmar,
Nepal, the Philippines, Romania, Senegal and Uganda. The Special Rapporteur also made
use of her extensive experience in the field of leprosy and, in particular, of her permanent
dialogue and interactions with persons affected worldwide and their representative
organizations. The goals, outline and content of the present report were thoroughly
discussed in focus groups, meetings and interviews with representatives of grass-roots
organizations of persons affected, at the Global Forum of People’s Organizations on
Hansen’s Disease, 2 organized by the Sasakawa Health Foundation, in order to deliver a
policy framework that responded to the needs and aspirations of persons affected and their
families from various regions, cultural contexts and lived experiences.
II. Adequate standard of living and economic autonomy
7.
Leprosy is classified as a neglected tropical disease closely linked to poverty by the
World Health Organization (WHO).3 According to WHO, infectious diseases contribute to
lifelong disadvantages, perpetuating the vicious cycle of poverty and infection. Limited
enjoyment of substantive equality among persons affected and their families has an impact
on the overall course of leprosy, from transmission, to health care and social rehabilitation
and inclusion after persons affected are cured. The socioeconomic and environmental root
causes of leprosy are widely acknowledged, although its mechanisms remain unclear. That
fact notwithstanding, neither person-to-person transmission nor genetic predisposition are
sufficient to explain the incidence or distribution of leprosy.
8.
Independent research points to the following socioeconomic and environmental risk
factors for the incidence of leprosy: poverty and inequality; household crowding;
inadequate nutrient intake; poor hygiene; lack of access to clean water (Mycobacterium
leprae can survive in some aquatic plants); low education levels; low income; and
geographical areas with deficient infrastructure and hindered access to goods and services.
Independent research also points to the protective effects of welfare measures on incidence,
adherence to treatment and cure.
9.
However, lack of targeted action on the social determinants of leprosy is a major gap
in global and national policies for the control of leprosy. The promotion of material equality
through redistributive policies that can guarantee a minimum standard of living to persons
affected and their family members, alongside equitable access to public goods and services,
is manifestly lacking. Strategies that can guarantee persons affected and their families
freedom from want, as well as their right to personal development and economic autonomy,
are broadly seen as secondary to public health goals, which continue to be disease-centred,
in opposition to being people-centred.
10.
In accordance with article 11 of the International Covenant on Economic, Social and
Cultural Rights, the Special Rapporteur considers progressive realization thereof to be the
standard and acknowledges the need to be sensitive to national specificities. in line with
1
2
3
The Special Rapporteur wishes to thank Fondation CIOMAL, IDEA, Lepra, the Leprosy Mission,
Netherlands Leprosy Relief and the National Alliance Against Leprosy Uganda for their important
contributions to the present report.
The Special Rapporteur wishes to thank Sasakawa Health Foundation for facilitating her in-depth
discussions with participants at the Global Forum of People’s Organizations on Hansen’s Disease.
See www.who.int\\neglected_diseases\diseases\en.
3
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