HR Advisory Committee: ILEP Intervention

ILEP is a Federation of NGOs working on leprosy in over 63 countries.

We would like to thank the Advisory Committee for an excellent report, we are happy to see how it is coming together, both for the areas it covers, but as well as for the attention that is needed in the last mile of tackling this old and complex disease

A few points we would like to rise for areas of endorsement or where we would like to work closer with the advisory committee.

Discriminatory laws

ILEP is undertaking research on where there are still discriminatory laws, which works together with WHO to receive its global target of 0 discriminatory laws by 2020

We welcome this report and the attention look forward to triangulating our information with the advisory committee. We will be developing an online platform to highlight this area – understanding that many of these laws are ancient laws, but we still need them repealed and how we can work together on achieving this - laws which have no place in 2016.

We also want to highlight where there are laws for positive inclusion as well, and we would like to commend Japan for its efforts in this area

We also look at formal state policies or practise that could promote discrimination, and ask for all States – not just the endemic countries. For example, this could include checking on your visa requirements and if you discriminate through this practise on if someone has had leprosy? We have to realise we all have a role in contributing to the discrimination

Women and Children

We welcome the attention given to this area and commend those countries listed in the report for the work in this area. While we appreciate the findings, ILEP is undertaking work to look at the practice of how women and girls with leprosy are accessing the necessary services, where we see some stark differences in how leprosy affects women and girls that show discrimination is rife in practice.

ILEP will be drawing more attention to this and look forward to contributing to further work in this report. We welcome the previous speaker’s suggestion of how we can engage UNICEF and potentially UNFPA.

Obviously what the report highlights is the connection that we all need to make between the policy and the practice

In this regard we endorse the reports recommendations for strengthening this

National Platforms – as we know, leprosy is a disease of stigma and we need the national platforms to bring the human rights institutions together with the ministries of health, the NGOs and particularly the people affected themselves – which as the report points out need to be heard more

At the international level, we welcome the recommendation for a mechanism that would ensure the follow up and reporting on the Principles and Guidelines –agreeing with Prof Obata on need for a holistic approach if we are to achieve success. We would like to engage on the discussion on the mandate of this mechanism – especially how we can ensure its success as well, which for the complexities around this disease, requires a holistic, multi sector approach.

Again, we would like to thank the Advisory Committee and look forward to the opportunity to contribute to this important work.