What We Do

Advocacy

ILEP’s approach to advocacy

Complementing ILEP’s work in health, rehabilitation and community development, advocacy has become a critically important focus. Through advocacy, ILEP aims to promote a more accurate understanding of leprosy, to challenge stigmatising attitudes, and to change the attitudes and priorities of institutions and people of influence.

The Sustainable Development Goals, adopted in 2015, provide a foundation for ILEP’s advocacy. UN member states pledged to ‘leave no one behind’ and ‘endeavour to reach the furthest behind first’. Stigma, exclusion, disability and poverty conspire to place individuals and families affected by leprosy the furthest behind in many communities. The explicit inclusion in SDG 3 of a commitment to end the epidemic of neglected tropical diseases, including leprosy, has given further impetus to ILEP’s advocacy towards zero leprosy.

Self-advocacy

People affected by leprosy are often marginalised and demoralised by the disease and society’s response to it. ILEP Members seek to address this by building people’s self-confidence and understanding of their rights and empowering them to press for change. Often the strongest progress is when people self-organise through self-help groups and other forums. Some ILEP Members have been especially active in fostering provincial and national organisations of persons affected by leprosy, some of which demonstrate steadily growing political influence.

Country-level advocacy

Many governments scaled down their leprosy programmes in the mistaken belief that leprosy had been eliminated. Even where there are active national leprosy programmes, they usually focus only on case finding and treatment, and much less (if at all) on the issues of disability and stigma. ILEP Members lobby central and local governments to allocate appropriate funding to leprosy, to build a serious intent towards zero leprosy, and to widen their focus to non-medical issues like socio-economic rehabilitation, disability and discrimination. ILEP Members also seek to sensitise other NGOs and civil society organisations to the realities of leprosy and to form lasting national collaborations.

World Health Organization

WHO classifies leprosy among the group of 20+ Neglected Tropical Diseases. ILEP is in official relations with WHO and is in a position to influence the policy and actions of the Global Leprosy Programme, the WHO NTDs department, and others. In the health and disability ‘space’ ILEP also works in participatory advocacy with the NGO NTD Network (NNN) and the International Disability and Development Consortium (IDDC).

United Nations High Commission for Human Rights

Speaking in June 2019 about leprosy-related stigma, the High Commissioner for Human Rights commented: ‘There is no medical justification for this fear and prejudice: it is a social invention’. Advocacy with the various instruments of the OHCHR responds to the reality that the label ‘leprosy’ is associated with the abuse and violation of the human rights of countless women, men and children – around 5 million of them alive today. ILEP works particularly with:

• The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, supporting her mandate in all practicable ways.
• The CRPD committee (Convention on the Rights of Persons with Disabilities), with generic and country-focused submissions on stigma, discrimination and denial of rights.
• The CEDAW committee (Convention for the Elimination of all forms of Discrimination Against Women) with submissions on human rights abuses experienced by women and girls affected by leprosy.
• The Human Rights Committee, ensuring that human rights abuses related to leprosy are included in the Universal Periodic Review process.

UN Principles and Guidelines

In 2010 the UN General Assembly and the Human Rights Council adopted the Principles and Guidelines for elimination of the discrimination against persons affected by leprosy and their family members. These Principles and Guidelines make national governments responsible to eliminate leprosy-related discrimination. They form an excellent roadmap on how to enforce legally binding human rights that are routinely violated towards persons affected by leprosy and their family members. Many of the Principles and Guidelines mirror the rights enshrined in the Convention on the Rights of Persons with Disabilities (CRPD). The preamble of the CRPD recognises the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support. ILEP argues that persons with leprosy-related disabilities or disadvantaged by the label ‘leprosy’ are the very ones who need this intensive support.

Regrettably, the Principles and Guidelines are non-mandatory and have largely been ignored, so that at state and community level, the same human rights abuses persist. Nevertheless, ILEP routinely refers to the Principles and Guidelines in submissions to the various human rights instruments of the OHCHR. Through this, we urge governments to implement the Principles and Guidelines as a significant contribution to enabling persons affected by leprosy to live with dignity.

Statements, submissions and briefings

Since 2019 ILEP has made regular submissions or briefings, particularly to the various UN human rights bodies. See here for details of ILEP advocacy statements, submissions and briefings.

Research

Although effective leprosy treatment has been available since the 1980s, it has not stopped transmission of the disease. Reported new case numbers have barely reduced in the past decade. Recent reviews by the Leprosy Research Initiative and the Global Partnership for Zero Leprosy (GPZL) have demonstrated that the tools and knowledge currently available are not enough to achieve our shared goals of zero transmission, zero disability and zero stigma and discrimination. The WHO Leprosy Guidelines (2018) demonstrated that even where there are research findings, they are often not of the quality needed to guide policy, and there are major gaps.

Better tools and innovative techniques are needed, and they require investment in high-quality research across the whole leprosy agenda.

Identifying research priorities

In 2018, the Global Partnership for Zero Leprosy mobilised more than 140 people from 20 countries to develop detailed research priorities toward zero leprosy. Eight research areas were selected: diagnostics, digital health, disability, epidemiological modelling and socioeconomic research, operational research, post exposure prophylaxis, stigma, and vaccines. Scientists and researchers from ILEP Members associations were prominent in the leadership and composition of the subgroups that worked in each area.

The result is a research agenda with wide global consensus. The reports of the subgroups that worked in the eight research areas are in Leprosy Review (September 2019). Because leprosy is a complex condition with medical, epidemiological, biological, socio-economic and cultural aspects, research projects need to integrate multiple disciplines and collaborate across traditionally separated fields in order to achieve breakthroughs. A commentary in the same edition of Leprosy Review highlights and offers observations on the reports, and suggests that more emphasis may also be needed on basic, as opposed to applied, research in areas such as microbiology, immunology, molecular biology and neuroscience.

Research investment

Most ILEP Member associations invest in research. This may be in the form of dedicated research facilities, identified long-term research projects, or operational research annexed to field-based programmes. The authoritative G-Finder reports provide up-to-date analysis of how research expenditure is allocated across neglected diseases, including leprosy.

In 2013 a group of ILEP Members decided to combine their research budgets to support important research projects and leverage external funding. The Leprosy Research Initiative is a combined venture of ILEP Members and closely associated partners which is now investing more than $1 million per year in leprosy research. LRI has also enabled the ongoing engagement of a large global network of researchers and scientists with an interest in leprosy.