Statements, submissions and briefings

This is the first formal briefing on leprosy by ILEP to the CRPD Committee. It was delivered to a lunchtime briefing session on leprosy in April 2019. It introduces leprosy as a human rights issue and urges the Committee to include leprosy in the scope of the CRPD Convention.

ILEP outlined its current strategies in connection with the main themes of the WHO NTDs Roadmap and urged the inclusion of leprosy among NTDs that are the subject of current WHO studies regarding the effects of the Covid pandemic

At the opening plenary of the Congress, ILEP used the four collaborative projects agreed by Members in June 2022 as a framework to describe ILEP’s emerging priorities and what these priorities say about the role of ILEP in the coming two to three years.

ILEP outlined how it works towards zero leprosy, specifically referring to the conclusions and recommendations from the first Vatican symposium in 2016

This statement summarised the results of a survey of organisations of persons affected by leprosy about the impact of the pandemic and drew particular attention to intersectionality, where vulnerability caused by leprosy worsens, and is made worse by, other vulnerabilities.

This statement was delivered during the NGO briefings to the opening session of the 22nd CRPD Committee. It introduces the main themes included in the country-specific ILEP submissions to the 22nd session and the 12th pre-session.

This submission drew the Committee’s attention to leprosy-specific issues related to the right to work and commented on the draft General Comment from a leprosy perspective. It urged the Committee to explicitly reference leprosy in its final draft.

This submission to the 87th pre-session of the Committee on the Rights of the Child recommended a set of actions by the government to protect the rights of children from families affected by leprosy, in line with the Convention on the Rights of the Child.

This submission to the 13th Pre-session of the CRPD Committee recommended inclusion in the List of Issues of a set of inclusions assuring the human rights of persons affected by leprosy in China, especially regarding the plight of older people and the leprosy villages.

This submission to the India country briefing at the 22nd CRPD session recommended, among other actions, immediate steps to repeal or amend the 108 discriminatory acts in force in India and to pass the proposed Elimination of Discrimination against Persons affected by Leprosy (EDPAL) legislation.

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Lao PDR.

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Mexico.

This submission to the Myanmar country briefing at the 22nd CRPD session recommended a set of actions to improve the human rights situation of persons affected by leprosy in Myanmar.

This submission to the 12th Pre-session of the CRPD Committee recommended repeal or amendment of four discriminatory laws in the List of Issues for Singapore.

This submission to the 12th Pre-session of the CRPD Committee recommended inclusions on human rights and leprosy in the List of Issues for Venezuela.

ILEP joined several hundred organisations in making a set of commitments, about what ILEP will do in the next 3-4 years towards disability inclusion, including the meaningful engagement of organisations representing persons affected by leprosy.

Responding to prepared questions, ILEP expressed its view on the advantages and disadvantages of the new Skin NTDs Framework in relation to leprosy

ILEP partnered in this submission by three of its member associations and two organisations of persons affected by leprosy to the 38^th cycle of the Universal Periodic Review, with recommendations to prevent ongoing social exclusion and provide adequate care to persons affected by leprosy in Mozambique.

ILEP and one of its member associations supported this submission written by the National Association of Persons Affected by Leprosy in Sierra Leone to the 38^th cycle of the Universal Periodic Review, with recommendations to address issues related to stigma and discrimination and  support persons affected by leprosy into employment, inclusion and independent living.

ILEP partnered with The Leprosy Mission PNG and two local coalitions of persons with disabilities in this submission to the 39^th cycle of the Universal Periodic Review, with recommendations to uphold and protect the rights of persons affected by leprosy and persons with disabilities in Papua New Guinea.

ILEP partnered with The Leprosy Mission Timor Leste and five local organisations or coalitions of persons with disabilities in this submission to the 40^th cycle of the Universal Periodic Review, with recommendations to uphold and protect the rights of persons affected by leprosy and persons with disabilities in Timor Leste.

ILEP partnered in this submission to the 37^th cycle of the Universal Periodic Review of recommendations to prevent ongoing social exclusion and stigmatisation of persons affected by leprosy in Nepal.

ILEP supported this submission by 14 organisations in Indonesia to the  78^th pre-session of the CEDAW Committee. It proposes a series of government actions to promote the rights of women affected by leprosy in Indonesia within the CEDAW framework.

ILEP supported this submission by one of its member associations and a civil society organisation in Myanmar to the 37^th cycle of the Universal Periodic Review, containing recommendations to prevent ongoing social exclusion and boost the inclusion of persons affected by leprosy in Myanmar.

The ILEP CEO proposed six ways in which ILEP members and other NGOs can contribute to the goal of zero leprosy-related stigma and discrimination. He also suggested reasons why States are slow to repeal and amend discriminatory laws.

ILEP’s statement welcomed the report and recommendations of the UN Special Rapporteur and emphasised the need for a whole-government approach to ending discrimination in healthcare, education and employment.

ILEP supported the framework for inclusion recommended in the presentation of Alice Cruz to the Human Rights Council and urged renewal of her mandate as Special Rapporteur.

ILEP supported the Special Rapporteur’s report and recommendations related to the right of people affected by leprosy to the highest attainable standard of physical and mental health.

ILEP’s statement welcomed the report and gave ILEP’s own perspective on the achievements of the mandate during the past six years. It also highlighted the long list of remaining challenges and the related recommendations of the UN Special Rapporteur, and echoed the call by organisations of persons affected by leprosy to extend the mandate.

At a side event, ILEP proposed a set of interlocking approaches through which NGOs can work with governments to promote livelihoods and the financial independence of people affected by leprosy so that they are not even more left behind.

ILEP urged repeal of the discriminatory marriage law, with reference to Nepal’s obligations under the CRPD Convention and other relevant factors

This submission to the Bangladesh country briefing at the 23rd CRPD session proposed a set of actions to improve the human rights situation of persons affected by leprosy in Bangladesh.

ILEP supported this submission by two civil society organizations in Angola to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a range of actions to reduce stigma, poverty and human rights abuses suffered by people affected by leprosy in Angola.

ILEP supported this submission by 14 civil society organizations in Indonesia to the 13th Pre-session of the CRPD Committee. It recommends inclusion in the List of Issues of a set of measures promoting the rights of persons with leprosy related disabilities in Indonesia within the CRPD framework.

ILEP supported this submission by one of its Member associations to the 72nd session of the CEDAW Committee covering government actions to improve the human rights situation of women affected by leprosy in Ethiopia.

ILEP coordinated a submission to the 19th Pre-session of the CRPD Committee recommending inclusion in the List of Issues of a set of measures assuring the human rights of persons with disabilities, including persons affected by leprosy, in Pakistan, especially regarding the plight of older people and the leprosy villages.

ILEP supported a constituency statement urging Member States to champion health equity for persons with disabilities, and ensure accessibility of person-centred primary health care close to where people live and reaching the furthest behind first.

ILEP summarised key concerns around COVID-19 and urged WHO and Ministries to work with leprosy program managers on safe and effective transition to the ‘new normal’ and innovative approaches to the continuum of care during ongoing pandemic.

ILEP summarised key concerns around COVID-19 and urged WHO and Ministries to work with leprosy program managers on safe and effective transition to the ‘new normal’ and innovative approaches to the continuum of care during ongoing pandemic.