Leprosy discussed at UN this week

August 9, 2016

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

The Principles and Guidelines were endorsed by the General Assembly in 2010, but no significant follow-up has been undertaken until February this year. This preliminary report was based on the results of a questionnaire with a total of 54 responses from states, national human rights institutions, national and international NGOs  with a significant contribution from ILEP Members. Four initial recommendations have been developed:

1) As a first and critical step, Governments should support and promote awareness campaigns regarding the Principles and Guidelines in collaboration with representatives of persons affected by leprosy and their family members, religious leaders, public figures and the media and all other 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. National bodies should work in close cooperation with people affected by leprosy. Governments need to designate an appropriate body and establish a national committee that comprises all stakeholders and includes persons affected by leprosy and their family members in order to follow-up and monitor effective implementation of the Principles and Guidelines.

4) In order to ensure continuous follow-up at the international level, the report proposed that 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. A holistic mechanism should be created.

ILEP Intervention – HR Advisory Committee

ILEP had the opportunity to make an intervention to the HR Advisory Committee. ILEP’s Chief Executive Officer, Tanya Wood called for all discriminatory laws to be abolished.

ILEP is focused on reaching the global leprosy target set with WHO on achieving zero discriminatory laws by 2020. As such we welcome the attention given in this report to this area and the opportunity to continue working with the Advisory Committee on this target and calls for all States in both endemic but non-endemic States to review their formal state policies or practice that could promote discrimination.

Whilst welcoming the attention given in the report on Women, Girls and Vulnerable Groups, we are pleased to see that the findings are indicating a lack of formal discriminatory policies. However, 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 looks forward to contributing further to this important topic for the final report.

ILEP endorses the progress report’s recommendations for strengthening the connection between policy and practice, especially its recommendation for the inclusion of people affected by leprosy in the decision-making process and the 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.