Leprosy discussed at UN: presentation of draft final report

February 22, 2017

Palais de Nations, Geneva: The Human Rights Council Advisory Committee presented its draft final report on the implementation of the Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members.

Four initial recommendations have been developed in the draft final report. In short:

  1. Governments should support and promote awareness campaigns regarding the Principles and Guidelines in collaboration with relevant stakeholders.
  2. Governments should review and identify national policies, laws and discriminatory practices that may engender stigma and discrimination against persons affected by leprosy and their family members and amend or repeal such discriminatory laws.
  3. Participation and involvement of people affected by leprosy is crucial to the implementation of the Principles and Guidelines.
  4. A specific and dedicated mechanism should be established within the existing United Nations Human Rights machinery to follow-up, monitor and report on progress made at the national level towards the effective implementation of the Principles and Guidelines.

ILEP at the 18th session of the Advisory Committee of the Human Rights Council

ILEP had the opportunity to provide feedback on the draft final report at the HR Advisory Committee on February 20, 2017. In the Statement, ILEP’s Chief Executive Officer, Tanya Wood, made reference to the following four points:

1.   Reference was made to remarks from the ILEP Panel of People affected. Since the last draft report was issued, the Panel, led by Mathias Duck, had conducted research about their experiences of stigma and discrimination. This research received responses from 265 people affected by leprosy from 20 countries. The findings support the UN report’s findings:

  • Discriminatory practices and language are still part of the experience of most people affected by leprosy.
  • There is little evidence as to the involvement of States in reducing stigma and discrimination against persons affected by leprosy.
  • Many persons affected by leprosy are not able to participate in the elaboration of policies that affect them directly.

ILEP endorses the progress report’s recommendation for the inclusion of people affected by leprosy in the decision-making process and stresses that empowerment and participation of persons affected is a key aspect that is not practiced enough.

2.   ILEP welcomes the reference to achieving zero discriminatory laws and calls for more attention by States for detection of possible discriminatory laws worldwide and for these laws to be abolished

3.   In addition, ILEP welcomes the attention given in the report on Women, Girls and Vulnerable Groups. ILEP’s work in this area is revealing some stark differences in how leprosy affects women and girls versus how it affects boys and men. ILEP welcomes more attention to this important area and looks forward to contributing further to this important topic

4.   Finally, ILEP endorses the progress report’s proposed mechanism that would ensure the follow-up and reporting on the Principles and Guidelines. ILEP would like to take part in the discussion on the mandate of this mechanism, especially in respect of how we can ensure its success, which for the complexities around this disease, requires a holistic, multi-sector approach.

A final report and recommendations will be submitted the UN Council at its thirty-fifth session in June 2017.