ILEP and the Universal Periodic Review

What it is

The Universal Periodic Review (UPR) is the mechanism by which the UN Human Rights Council assesses the human rights record of every UN member country, over a five-year cycle. The purpose is to improve the human rights situation on the ground. This link, including a short video, provides a good overview.  The UPR aims to cover the totality of the human rights situation in a country. ILEP aims, where possible, to submit reports to the UPR because we want to ensure that leprosy and disability are strongly featured there. If our reports make a good impression, along with appropriate lobbying of the Permanent Missions in Geneva, then the final recommendations made by state parties at the Human Rights Council are more likely to include disability and leprosy.

What we do

ILEP has collaborated in reports to the UPR on Sierra Leone, Nepal, Myanmar, Mozambique and – most recently – Papua New Guinea (PNG). In most of these cases the report was specifically about the human rights situation related to leprosy, and was usually written in collaboration with a national organisation of persons affected by leprosy. The PNG report went further. This was a collaboration between The Leprosy Mission, two PNG coalitions of persons with disabilities, and ILEP. The report contains recommendations about access to justice, equality before the law, rights of women with disabilities, right to education, right to health, access to employment, participation in cultural and social life, accessibility in general, and public awareness raising. The report is on the ILEP website.

What we are learning

Geoff Warne (ILEP CEO) recently interviewed Natalie Smith, country leader of The Leprosy Mission PNG, who had led the process of consultation and development of the report. This was a good achievement and we hope that the PNG experience will inspire other ILEP members who are thinking about how to produce or collaborate in reports for countries in which they are working. The following paragraphs are a summary of Natalie’s key points of advice.

Don’t leave it too late

Natalie recommends starting the process three months before the deadline. It takes time to plan what is needed, coordinate meetings with stakeholder groups such as DPOs, look at what happened as a result of previous UPR recommendations, discuss the key human rights issues affecting persons with disabilities and persons affected by leprosy, and come up with recommendations. Plenty of time is also needed for the final writing, review and editing of the report.

Respect the stakeholders

The two leading national DPOs in PNG were key stakeholders. Their engagement was essential but could not be taken for granted. TLM organized three meetings over two months, in pleasant surroundings, and although enthusiasm dwindled over time, the input from the DPO representatives was invaluable. They knew how things really were ‘on the ground’ and what the key barriers were, and they were able to provide real-life case studies which are very much valued in the UPR reports. Other persons with disabilities, who were not DPO representatives but who had good knowledge and linkages, also gave valuable input.

Start with reports from the previous UPRs

UPRs are undertaken every five years and the final reports by the Human Rights Council are readily available. When providing reports into the UPR process, NGOs are urged to highlight areas where the government has not, or not adequately, followed the recommendations. So the PNG group started by looking at all the recommendations related to disability or leprosy in the 2011 and 2016 reviews, and discussing what the government had, or had not done, in response to the recommendations. The PNG group also looked at recommendations in previous reports that were not specifically about leprosy or disability but which might have linkages, for example recommendations on violence against women, police brutality, sorcery, and shame-related issues.

Look at other publications

Other evidence and data should also be considered. The PNG group looked at:

• UN human rights conventions or treaties the government had signed up to, that might be relevant to disability and leprosy (examples: CRPD Convention, Convention on Rights of the Child, International Covenant on Civil and Political Rights, CEDAW Convention)
• the annual Human Rights Watch reports on human rights violations regarding women, children and persons with disabilities
• legislation related to persons with disabilities and/or leprosy, and major legislative gaps
• national development plans relevant to disability or leprosy
• national disability policy or strategy
• UN disability factsheets
• World Report on Disability (WHO and World Bank)

The ILEP Secretariat can assist with identifying and providing links to many of these documents.

Use the CRPD Convention as a framework for the report

The paragraphs of the Convention on the Rights of Persons with Disabilities (CRPD) cover the main aspects of human rights protection for persons with disabilities. Moreover, DPOs are usually familiar with the CRPD (or, if not, they benefit from looking closely at what it says). So the PNG group looked at the main headings in the Rights section of the CRPD and, when they had something to say about those topics and some real-life examples or case studies, they used the headings as the framework or structure for their report.

Work together on the recommendations

Recommendations in UPR reports are about what the government should do to improve the human rights environment in the country. Well-thought and well-framed resolutions, supported by factual information and case studies, are the most important feature of the report. The PNG group brainstormed recommendations arising from their discussions and their review of previous UPR recommendations and other publications.

Make sure that a capable writer is available

A good writer from the TLM International Office was available. The PNG team used a spreadsheet to list recommendations, references, supporting evidence and case studies or examples, and the writer used these as the basis for the first draft. The final report was ten pages long and contained 29 recommendations. The ILEP Office recommends looking at this report as a potential model, but not seeing it as a target: some other UPR reports are shorter.

It was worth doing

At the outset the task seemed very big but once the stakeholders were together and a structure had been decided upon, it became more straightforward. In addition to the production of the UPR report, it was a very good way for an ILEP member to work with the DPOs and other in-country stakeholders.

Building resilience in the face of discrimination

In 2018 ILEP gained funding from the Leprosy Research Initiative (LRI) for a study entitled ‘Promoting inclusion where it matters most: Building resilience in individuals and families’. Though leprosy and leprosy-related stigma or discrimination can have a major impact on psychosocial wellbeing, there is also evidence that persons affected by leprosy can overcome experiences of discrimination and exclusion, and in doing so they demonstrate numerous dimensions of resilience.  So the study investigated whether efforts to strengthen individual and family resilience would enable people to better address stigma and discrimination.

Concept and design

The study was initiated and led by Zoica Bakirtzief da Silva Pereira (currently a member of the ILEP Advisory Panel), Anna van’t Noordende (now with NLR) and Pim Kuipers (former ILEP staff member). They designed a ten-week resilience development programme, along with a manual, and piloted it in collaboration with staff from ILEP members in two quite different contexts in India. These were an urban slum in Hyderabad, in association with ILEP member Fontilles, and a rural tribal area in Odisha, in association with ILEP member Lepra.

The programme was undertaken in family settings, and the participants were people with personal experience of leprosy and their family members. To make the concept of resilience more meaningful to the participants, bamboo was chosen as an emblem of the programme, with the catch-phrase: ‘being strong and bouncing back like the bamboo in a storm’. The content of the programme covered four main themes: strong roots of the bamboo plant (knowledge), strong trunk (thoughts and behaviour, positive self-view), strong branches and leaves (beliefs, faith and knowledge of rights), and strong soil (relationships within and beyond the family, and social support).

Results

The results of the study were published in April 2021. The ten-week course was well-received by the individuals and families. The ILEP member staff involved in the programme were very supportive: for them, it seems to have been a valuable entry point into a deeper understanding of psychosocial issues in leprosy. The effects of the programme on the two communities, measured through resilience and quality of life questionnaires, were markedly different. The rural community in Odisha demonstrated significant gains in resilience, whereas the urban slum community in Hyderabad did not. Both communities had markedly higher quality of life scores after the programme.

The full report includes some very thoughtful analysis of why the results were different. We recommend a close reading of that analysis. It is a useful reminder of the way in which events and circumstances outside of a programme or intervention can have a dramatic effect on results.

Next steps

The authors conclude that this 10-week family-based intervention is feasible and has the potential to improve resilience and quality of life. There are fruitful subjects for further research coming out of the study – for example, the inter-relationship between resilience and religious belief. They note that the 10-week programme is one of the first interventions designed to strengthen psychosocial resilience of persons affected by NTDs such as leprosy in a developing country context. They recommend a larger-scale trial to determine the effectiveness and long-term sustainability of the intervention.

ILEP statement of commitment to the participation of persons affected by leprosy

This statement is also available in French, Spanish and Portuguese.

BACKGROUND

The involvement of communities and persons affected is not a new concept in primary health care and disease programs. Human rights-based approaches to NTDs, including leprosy, emphasise that any interventions should be based on the principles of participation, non-discrimination and accountability[1]. WHO has issued specific Guidelines for strengthening participation of persons affected by leprosy in leprosy services[2]. However, the active participation of persons affected by leprosy is not always a reality.

THE EASI STRATEGY 

Engaging persons affected by leprosy is essential to the success of leprosy programs. Having experienced the disease, disability and associated discrimination, they have a unique voice and perspective, they bring passion to the work and take the programs closer to the communities they are designed to benefit. ILEP and its Members adopt the EASI strategy to ensure that persons affected by leprosy have the space and the support for meaningful and effective participation.

ILEP COMMITMENT  

In relation to the EASI strategy, and within their sphere of influence, ILEP and its Member associations commit to work towards the following outcomes:

• Policy-making: Persons affected by leprosy are supported to participate in the development, monitoring and evaluation of leprosy-related policies, guidelines and preferred practices at all levels.
• Programs: Persons affected by leprosy systematically participate in all stages of leprosy programs from planning, to implementation, monitoring and evaluation. Their knowledge, skills, experience and connections are valued in these roles.
• Leadership, networking and sharing: Persons affected by leprosy are supported to take on leadership roles in self-care groups, support groups and other relevant local, national and international networks; to seek resources and build local capacity; to encourage participation of new members; and to share their experience with others.
• Advocacy: Persons affected by leprosy actively participate in advocacy for participation of persons affected, human rights, the removal of all discriminatory laws, regulations and practices and universal access to quality services that are fully integrated into strengthened local health systems;
• Public representation: Persons affected by leprosy are supported to actively participate at local, regional and global fora and to become spokespersons in leprosy and related campaigns or speakers at public events.
• Research: Persons affected by leprosy are supported to participate in the planning and execution of leprosy-related research
• Gender: Specific attention is paid to ensuring equal participation by women affected by leprosy in each of these actions

Download PDF

[1] A human rights-based approach to neglected tropical diseases. World Health Organisation, 2010 http://www.who.int/neglected_diseases/Human_rights_approach_to_NTD_Eng.pdf.

[2] https://apps.who.int/iris/bitstream/handle/10665/205169/B4726.pdf?sequence=1&isAllowed=y

WHO Global leprosy strategy 2021–2030

The new WHO global leprosy strategy, entitled ‘Towards Zero Leprosy’, was released on 15^th April. This is one of the disease-specific strategies underpinning the WHO Road map for NTDs 2021–2030. The strategy presents the basic direction, goals, challenges and strategic pillars at a global level. National NTD and leprosy programmes are urged to adopt it and to adapt its strategic pillars to their country context. This is a crucial document for ILEP and its member associations, and for all partners working in leprosy.

Vision, goal and targets

‘Towards Zero Leprosy’ is defined in the strategy’s long-term vision as zero infection and disease, zero disability, zero stigma and discrimination. The medium-term goal is the elimination of leprosy, defined as interruption of transmission, and a WHO working group has been developing definitions around this during recent months. It is not expected that this goal will be achieved globally by 2030, though a further 86 countries are expected to do so. The four high-level 2030 targets are:

• 120 countries reporting zero new autochthonous cases.
• 70% reduction in annual number of new cases detected.
• 90% reduction in rate per million population of new cases with grade-2 disability.
• 90% reduction in rate per million children of new child cases with leprosy.

These are set out in more detail in the table below.

Strategic pillars

To achieve these targets, the strategy incorporates four strategic pillars, each with a number of key components and a set of relevant indicators. The strategic pillars are:

1. Implement integrated, country-owned zero leprosy roadmaps in all endemic countries.
2. Scale up leprosy prevention alongside integrated active case detection.
3. Manage leprosy and its complications and prevent new disability.
4. Combat stigma and ensure human rights are respected.

The first, third and fourth headings are broadly similar to the three pillars of the previous strategy, though there is new material in each case. For example, Pillar 1 now has recommendations to form national partnerships for zero leprosy and multi-stakeholder zero leprosy roadmaps, a reflection of the emergence of the Global Partnership for Zero Leprosy. It also has much stronger reference to data quality, and now includes the monitoring of adverse drug reactions. Pillar 3 includes a section about mental wellbeing and counselling, on which the previous strategy was silent, along with more specific material around self-care. Pillar 4 gives emphasis to the Principles and Guidelines for elimination of discrimination against persons affected by leprosy and their family members, with the full text of the Principles and Guidelines in an appendix, and explains the importance of including leprosy into national human rights policy frameworks.

Pillar 2 is new in that, alongside ongoing active case detection, it adds the scaling up of leprosy prevention in line with the recommendation in the 2018 WHO Guidelines for the diagnosis, treatment and prevention of leprosy. It also refers to the potential of existing or new vaccines, which were not part of the picture when the previous strategy was written.

Aside from what is new in the strategic pillars, there are distinct differences in some of the language, which is consistent with the change in focus in the WHO Road map for NTDs. For example, although the previous strategy referred to the mainstreaming of leprosy within primary and secondary healthcare systems, the new strategy refers constantly to leprosy services being integrated with other health services and, particularly, with other skin NTDs.

The strategy also includes a set of sixteen research priorities for this strategic period, and emphasises that global and national investment in research are essential to achieving zero leprosy.

Adoption and adaptation of the strategy

It is likely that ILEP members working closely with national leprosy control programmes will be asked to advise and support Ministries of Health on the implications of the new strategy for national leprosy and NTD programmes. Five years ago, some countries simply adopted the strategic targets and pillars of the previous strategy as their own country strategy, but the WHO Global Leprosy Programme advises against that. It points out that the 2030 targets in the strategy are global targets. Countries need to set targets that are relevant to their own leprosy situation and baseline data, in order to contribute to the achievement of global targets.

The strategic pillars have been written so as to be relevant to both higher-endemic and lower-endemic settings. However, countries (and ILEP members that are advising them) should closely examine the strategic pillars and the detailed components and content that underlies the pillars, and determine what is relevant for progress towards the country’s own leprosy and NTD targets.

The ILEP Office intends to host online workshops to give ILEP member staff the opportunity to ‘unpack’ the NTD Roadmap and the Global Leprosy Strategy and explore their implications in greater depth.

ILEP’s response to the Global Leprosy Strategy

ILEP has appreciated the opportunities for input into the strategy development process and welcomes the close integration between the NTD Road map and the Global Leprosy Strategy. ILEP also applauds the improvements over the previous strategy. The 2021-2030 strategy is more comprehensive, and ILEP members have appreciated the increased emphasis on integration, the focus on country ownership for sustainability, the inclusion of mental wellbeing, and the repeated references to involvement of persons affected by leprosy. However, no strategy is perfect. Some ILEP members would have liked to see a stronger focus on gender equity, a more thorough research section, and clearer references to logistics including MDT supply, given the supply issues over the past twelve months. There is also concern among some ILEP members over the redefined ‘elimination’ goal and the accuracy of the baseline numerical data.

The right to work

ILEP recently contributed to discussions by the CRPD Committee (Convention on the Rights of Persons with Disabilities) about the right to work. The Committee is developing a binding General Comment on Article 27 of the Convention. Article 27 is to do with various aspects around the right of persons with disabilities (including persons affected by leprosy) to get into paid work and remain in work. This is a significant issue for people affected by leprosy, who face a range of barriers to employment. Some of the barriers are unique to leprosy, so ILEP asked the Committee to include specific reference to leprosy in its General Comment.

Discriminatory laws

ILEP drew the Committee’s attention to the fact that, amongst the 130 published laws that discriminate against persons affected by leprosy, 25 relate to employment. These include laws in India (22), Thailand, Pakistan and the Bahamas. Typically, the laws bar persons affected by leprosy from obtaining work permits, from gaining certain sorts of employment-related licenses, and from holding certain types of jobs. ILEP is adamant that these laws need to be modified or repealed without delay. More positively, Vietnam, Tanzania, Colombia and Bangladesh present examples of laws that encourage and support the rights of persons affected by leprosy.

Harassment

ILEP described to the Committee how people affected by leprosy are liable to harassment in employment settings when and if their previous experience of leprosy is revealed. This harassment is amplified in cases of intersectionality – that is, where a person’s vulnerability due to the label of ‘leprosy’ is compounded by other vulnerabilities such as gender, race, age, mental health status or degree of physical impairment.

Self-help groups and livelihoods

ILEP member associations are engaged in many countries in forming and supporting self-help groups. Many groups embark on small savings schemes, and these savings along with external seed funding may be deployed into loans that enable group members – either as individuals or as a cooperative cluster – to invest in livelihood development. Livelihood decisions are usually vetted by the group, which increases the probability of success. ILEP outlined to the Committee the empowering effects of self-help and microfinance programmes. These include:

• Reduction in stigma and social exclusion
• Opportunities for self-employment
• Inclusion within financial systems
• Food security, especially where microfinance enabled people to engage in agriculture.
• Education, where participants can earn the income needed to pay for children’s education.
• Improved overall health standard, associated with having the money to pay for medicines, improved quality nutrition and more frequent meals.

However, persons with disabilities are over-represented among those that earn their living through self-employment, especially in the informal sector. ILEP told the Committee that this factor is even more pronounced for leprosy, since negative attitudes to the disease hold young people affected by leprosy back from both educational attainment and employment. As long as the livelihoods of persons affected by leprosy remain predominantly in the informal sector, their rights are not acknowledged and they are therefore vulnerable to abuse. Efforts are needed to move people affected by leprosy to the formal economy.

Vocational training

Vocational training, both institutional and community-based, can become a lifeline especially for young people who have found that discrimination has resulted in a low level of education but who want to enter employment in the formal economy. ILEP supported the Committee’s call on governments to enable persons with disabilities to access mainstream vocational and skills development programmes, but pointed out that as a result of low educational attainment and anti-leprosy prejudice, this mainstreaming is often not possible for young people affected by leprosy. Some ILEP member associations have invested heavily in bespoke vocational training programmes for the benefit of young men and women with personal experience of leprosy or from leprosy-affected households, or with other disabilities.

ILEP shared some of the key learnings from evaluations of its members’ vocational training programmes, which have demonstrated the need for:

• Advocacy with schools to ensure children from leprosy-affected backgrounds are not disadvantaged in schooling.
• Advocacy with mainstream vocational training providers to counter discriminatory attitudes towards student applicants.
• Placement activities, which are needed because the attitudinal barriers are so great that even fully certificated vocational training, on its own, may not be enough.
• Continuous scanning of the market to align job training, life-skills development and placement with the emerging external opportunities. This needs to be accompanied with ongoing relationships with key commercial/industrial sectors.
• Post-placement mentoring and alumni associations.
• Ongoing action towards the goal of remuneration levels for female graduates being commensurate with males, whether as employees or as self-employed entrepreneurs.

Employer advocacy

Many employers, reflecting attitudes in the community, discriminate against potential employees from leprosy-affected backgrounds. ILEP highlighted the need for determined advocacy towards policy-makers and employers to remove the attitudinal barriers that prevent so many people affected by leprosy from obtaining jobs, and assert their right to move into work and to stay in work. If efforts towards employment are not accompanied by intensive efforts at education and awareness of the workforce, the patterns of exclusion and harassment are likely to be repeated. ILEP supported the Committee’s recommendation of special programmes targeting persons with intellectual and psychosocial disabilities and other especially marginalised groups, and asked the Committee to explicitly state that these marginalised groups include people affected by leprosy.

Reasonable accommodation

ILEP welcomed the Committee’s intention to make an explanatory comment about reasonable accommodation – the responsibility of the employer to make adjustments that enable a person affected by leprosy to work successfully. One of the effects of nerve damage caused by leprosy is loss of feeling in hands and feet, which leads to damage unless the person learns vigilance. ILEP member associations offer physio and occupational therapy, training in self-care and advocacy for or provision of certain aids and appliances that enable the individual to function independently and maintain employment. ILEP commented that, in many cases, reasonable accommodation involves relatively low-cost provision of protective footwear and gloves or other simple devices that enable anaesthetic hands to be used for employment without damage.

Inter-relationship of human rights of persons affected by leprosy

ILEP commented that, for people affected by leprosy, the right to work is intrinsically connected to other rights in the CRPD Convention, such as the general right to non-discrimination, right to freedom from all forms of violence, right to inclusion in the community, right to education, right to health and healthcare, right to rehabilitation, and right to social protection. ILEP emphasised the pervasive effect of leprosy-related stigmatisation and discrimination on the enjoyment not only of the right to work, but of all of these rights and freedoms.

WHO NTDs Roadmap 2021-2030

The WHO Neglected Tropical Diseases (NTDs) Roadmap 2021-2030 was launched at the end of January after a long period of international consultation. There is an abbreviated version of the Roadmap, but we recommend the full version as well as the NTD Sustainability Framework, a companion document.

The Roadmap is exceptionally important for leprosy. The major themes, especially the cross-cutting approaches of integration, mainstreaming, country ownership and sustainability, form a new landscape for ILEP’s strategies and activities. The Roadmap also has four detailed pages of specific objectives and approaches for leprosy, which form the basis for the new WHO Global Leprosy Strategy, due to be launched in March.

Accelerate programmatic action

This is the first of the major themes in the Roadmap. There is an emphasis on the need for research and development into new interventions and new tools. For leprosy, three critical actions are listed:

• Update country guidelines to include use of single-dose rifampicin for postexposure prophylaxis for contacts, and advance research on new preventive approaches.
• Continue investment into research for diagnostics for disease and infection, and develop surveillance strategies, systems and guidelines for case-finding and treatment.
• Ensure medicines supply, including access to MDT, prophylactic drugs, second-line treatments and medicines to treat reactions; monitor adverse events and resistance.

Intensify cross-cutting approaches

This is the second major theme. The Roadmap promotes a shift is from a siloed disease-specific approach to cross-cutting approaches, including integration across multiple NTDs, mainstreaming in national health systems, and coordination with other sectors within and beyond health.

For leprosy, one fundamental issue is integration. The Roadmap encourages countries to integrate all NTDs on to a single platform that includes not only prevention but also treatment, care, rehabilitation and health education. There is a particular emphasis on integrating the eight skin NTDs: Buruli ulcer, leishmaniasis, leprosy, LF, mycetoma etc, onchocerciasis, scabies and yaws. One of the indicators in the Roadmap is the number of countries that implement integrated skin NTD strategies (currently 4, but the target is 40) so it can be assumed that leprosy-endemic countries will be urged by WHO to consider this. Figure 1 below shows some of the ways in which WHO expects that leprosy services will be integrated with other skin NTDs.

Figure 1

Mainstreaming in national health systems is another feature that is relevant in situations where leprosy programmes are implemented separately, or in parallel, with the country’s mainstream health system. The Roadmap is clear that NTD interventions, from prevention to diagnosis, treatment, care and rehabilitation, should be delivered through community, primary or secondary care facilities in the national health system. This contributes to sustainable, efficient NTD prevention and control and – in line with universal health coverage – it enables NTD patients to access all aspects of treatment, care and support. In many countries, health systems strengthening will be essential, otherwise the risk is that mainstreaming reduces patients’ access to leprosy and other NTD services. Figure 2 below describes how this mainstreaming could work in practice, though details would differ from country to country.

Figure 2

There is also emphasis on coordination with other departments in the Ministry of Health, and other sectors beyond it. For leprosy, some of the obvious intersections within Health are mental health, disability and inclusion, and eye health. There are other coordination opportunities beyond Health, including WASH, education, and justice and social welfare (particularly important for preventing structural discrimination including abolition of discriminatory laws, and working with communities to conduct anti-stigma interventions).

Country ownership

The third major theme is a shift is from an agenda driven by partner support and donor funding, to country ownership and (primarily) domestic financing. The sustainability framework is an important document in this regard, because it describes the crucial ongoing role of INGOs like ILEP in a context of country ownership.

The framework defines sustainability as ‘the ability of national health systems to maintain or increase effective coverage of interventions against NTDs to achieve the outcomes, targets and milestones identified in the new road map for 2030.’ To build sustainability, not only will NTD programmes need to be built upon national health systems, but also international donors and implementing partners will need to consider their potential roles in sustainability and especially in strengthening health systems. When countries depend on partners for NTD-specific expertise and funding, there is a risk of fragmentation, usually inadequate focus on health systems strengthening, and chronic uncertainty over whether partner funding will continue. The framework also raises the issue of power: who decides how NTD interventions are organised and implemented?

Partners like ILEP and its member associations are urged to use the framework to think through some of the deeper issues on sustainability. In particular, we are encouraged to identify opportunities in which technical assistance and funding assistance can be used, and possibly redirected, to better support sustainability.

Uniting to Combat NTDs

Uniting to Combat NTDs was established after the signing of the London Declaration on NTDs in 2012. During 2020, as part of a total review of structure and strategy, Uniting expanded its focus from 10 to all 20 NTDs. One facet of the new structure is a consultative forum, which includes Dr Wim van Brakel, chair of the ILEP Technical Commission.

Uniting’s new mission is to create political will and an enabling environment for countries to achieve the WHO NTD road map targets and deliver the SDG goal to end NTDs by 2030. Recognising that there are many organisations working in the NTD ‘space’, UTC wants to add value in four ways:

• providing a platform for collective advocacy
• facilitating communications and active partnership across all the NTDs
• being a trusted and credible voice to open doors at the international level
• using its power to convene partners across and beyond NTDs to raise the profile of NTDs globally

The new strategy ‘Coming together to end the neglect’ has three main aims.

The first is to increase the relevance of NTDs in global and regional agendas. This includes using existing frameworks to provide accountability for policy and funding commitments, cultivating endemic country leaders as champions for NTDs, and working with partners to build strong campaigns to influence new and existing donors and endemic countries.

The second aim is to mobilise national and international resources for NTDs. This includes not only ongoing commitments from key NTD donors and the pharmaceutical industry, but also additional resources from key international donors, the private sector, and foundations. In line with the NTD Roadmap, there is also a focus on promoting inclusion of NTDs in endemic countries’ domestic health funding.

The third aim is to facilitate an engaged partnership to support NTDs. This involves working closely with NTD partner networks, like ILEP, to share information and create a unified voice throughout the NTD community, make connections among partners for collective advocacy and resource mobilisation, and collaborate so as to magnify partners’ own advocacy and resource mobilisation efforts.

A summary of the strategy can be read here. ILEP appreciates the particular capabilities that Uniting to Combat NTDS brings to the NTD world, especially towards building stronger international collaborations and mobilising new resources. ILEP looks forward to engaging with Uniting towards our mutual objectives.

Interim Advice on the use of Rifampicin for post-exposure prophylaxis (PEP)

Issued by the ILEP Technical Commission, February 2021. This is a non-technical version of the advice. The full version is available here.

Various problems have affected the supply of MDT this year. The most recent has been the discovery of impurities, known as nitrosamines, in rifampicin. The discovery came through a new drug screening process recommended by WHO. Nitrosamines appear to be a by-product in the production of rifampicin and have probably been present for many years.

Nitrosamines are assumed to pose a health risk if a high enough cumulative amount is consumed over a person’s lifetime. For this reason, they are not considered a serious issue when used for treatment with MDT (normally one dose a month for up to 12 months) or for leprosy prevention as SDR-PEP (one single dose). The US Food & Drug Administration (FDA) and the European Medicines Agency (EMA) have both indicated that rifampicin should continue to be used to treat TB (where it is given daily) and leprosy, while the manufacturing process is revised to minimise the impurities. However, no statements have been made about rifampicin use for SDR-PEP.

In line with the statements from FDA and EMA about MDT, the ITC considers the potential health risk of a single dose of rifampicin to be extremely small. However, since SDR-PEP is given to healthy individuals, we have an obligation to minimise all known risks to health. Since another drug with similar nitrosamine impurities is used for chemoprophylaxis in TB, ITC has consulted with the WHO Global Leprosy Programme, WHO Global TB Programme and WHO Pre-qualification Team – Medicines (WHO PQT/MED), a global quality assurance programme for medicines. WHO-PQT/MED is tackling this issue for TB and leprosy jointly and will give guidance on rifampicin when it has completed its investigation.

In view of the above, the ITC will withhold recommendations regarding SDR-PEP distribution until the various ongoing investigations and the conversation with the Global TB and PQ programmes have concluded and their position has become clear. In the meantime, the ITC makes four recommendations:

1. Where ILEP is involved in the distribution of MDT or rifampicin, batches should only be purchased or used that have maximum nitrosamine levels below 5ppm per day as recommended by the US FDA.
2. When there is an acute shortage of MDT, any available rifampicin may need to be used for treatment of leprosy patients, rather than for chemoprophylaxis among contacts.
3. Whenever active case-finding efforts are undertaken, including contact examinations, the availability of treatment for any new cases identified must be ensured (preferably MDT). MDT, with impurity levels below the safety level mentioned above, is essential and safe for treatment of leprosy patients.
4. ILEP offices should do everything in their power to facilitate nitrosamine testing of rifampicin already available in their country, that is designated for SDR-PEP. Ideally, such testing should be done by each company producing rifampicin and by the national authority in charge of monitoring the quality of drugs. Recent random samples from currently available batches of MDT have found levels of nitrosamine to be under this limit, so if testing is not possible at present, current stocks of MDT are deemed to be safe.

Rights of women affected by leprosy

The Leprosy Mission and Disabled Persons International co-hosted an important event during December on the rights of women affected by leprosy. It took place as a side event during the UN’s major disability rights conference, the Conference of State Parties of the CRPD Convention.

Attendees heard from three women affected by leprosy: Lilibeth Evarestus of Nigeria, and Maya Ranaware and Jayashree Kunju of India. Other speakers were Alice Cruz (UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members), Amar Timalsina (chair of IDEA Nepal) and Pradeep Bagival (from UNDP Lao).

Lilibeth Evarestus, who is a member of the ILEP Advisory Panel of women and men affected by leprosy, spoke about the challenges women with disabilities face in accessing healthcare. “I appeal to governments at all levels to provide excellent standards of accessible health facilities that women can access without difficulty. Many of us are old, with little education, and may not withstand the long or rigorous travel or administrative protocols that are too often needed to access healthcare. Good standards of living and good health cannot exist without one another, they are interwoven.”

Maya Ranaware, also a member of the ILEP Advisory Panel, spoke about the hidden discrimination that women affected by leprosy may face. She commented that leprosy is a ‘neglected disability’ and is not always represented at disability platforms. “In the Covid-19 situation, we have seen all people losing livelihoods, and people affected by leprosy, especially women, will be at the bottom of the pyramid when it comes to getting their livelihoods back. Others will always get more attention and thus, Covid-19 has made it more difficult for women affected by leprosy to access livelihood opportunities.”

Jayashree Kunju spoke about the intersecting discrimination facing many women affected by leprosy. Even before leprosy is taken into account, women may struggle to thrive in their communities. Once you add the age-old stigma surrounding leprosy to this struggle, life can become “unbearable”. “I do request we look at the disease ‘leprosy’ as not just caused by bacteria, but one perpetuated by the State’s neglect. That may include lack of nutrition, lack of education and awareness, and a lack of sensitising communities to the complex manifestation of the disease.”

This is the first time that a major UN event has hosted a meeting to focus entirely on the rights of women affected by leprosy. It is an important step in efforts to ensure women affected by leprosy have a voice at the highest levels of policymaking.

The recording is available on YouTube and a write-up is available here.

Global Leprosy Update 2019

Published in WER on Sept 4^th, 2020. (WER 95:417-440)

Commentary by the ILEP Technical Commission, September 2020

This new update presents a large amount of helpful data on the present state of leprosy around the world, generally in Tables whose format we have become used to. An Editorial comment at the end gives further perspective.  The data themselves were received from 160 countries through the DHIS2 software or through an Excel-based form, which holds the promise of gradually improving consistency in the coming years.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets. Post-exposure prophylaxis (PEP) with single-dose rifampicin is mentioned as a WHO recommendation, but there are no process indicators in the report which would help to monitor progress.  There are many possible indicators, such as the number of countries with a policy to implement PEP, or the number of contacts who were given PEP.  Work is underway to estimate the population requiring PEP globally, so it would be worthwhile to start collecting data about how many people are receiving it. Along side PEP indicators, WHO also recommends monitoring trends in rifampicin resistance, which could theoretically be affected by PEP.

The main leprosy indicators are now all based on a denominator of 1 million population (1 million children, in the case of rates in children) and this standardization is welcome; it also helps to suggest that calculating these indicators for small populations may be misleading.  The key indicators are the case detection rate, the disability rate and the case detection rate in children.  The rate in children is declining gradually (7.78 per million children in 2019) and the 2030 target is to be below 0.8 cases per million children: this will be a challenge, but the indicator seems robust and helpful; it remains our best estimate of recent transmission.  The main problem with the figure of 7.78 per million children is that it conceals a very wide range of results for individual countries and regions (See Table 1 below). It would be useful to see this rate presented in future for each of the 23 global priority countries, with trends over time. Larger countries may also find regional trends useful in identifying areas of higher endemicity.

Table 1: Case detection rate (CDR) in children for 23 priority countries, per million children.  For countries with < 1m children, the exact rate is not calculated, but it is very high.  Data are taken from Table 5 of the Global Leprosy Update for 2019. The CDR is calculated from the first two columns of data (b/a).

The Grade 2 Disability (G2D) rate is gradually declining, but it is questionable whether the 2020 target of < 1 per million population will be met.  In Table 4 it would be helpful to add one line at the bottom, below the total new cases with G2D, giving the rate per million.  Small changes from year to year are less significant than longer term trends, but the increasing number of new cases with G2D in Brazil over the past 5 years, as shown in Table 4 of the Update, is a concern.  Although the Covid pandemic of 2020 does not affect these 2019 data, the capacity of health services to provide an acceptable level of care to those in need may be impaired in the coming years.

There are sparse data available for several issues that are mentioned briefly. Antimicrobial resistance (data from 11 countries), reactions (19,590 cases in 41 countries), adverse events related to MDT (none reported), foreign-born cases (836 individuals in 37 countries, of which 11 countries had no indigenous cases), relapse (3893 cases) and retreatment (15,517 cases). It is commendable that these data are now being collected and in future, it will be interesting to watch historical trends and to analyze individual country data in more detail. As almost 80% of all retreatment cases were reported from Brazil and India, it is vital that monitoring antimicrobial resistance is reinforced in those countries.

The number of countries with discriminatory laws was 22 despite recent efforts.  In the field of psychosocial support to people affected, new indicators are needed, but the relevant data may be difficult to collect.  Access to effective counseling is one area that could be monitored.

There are a few typing errors: in Table 2 the 2019 figure for cases with G2D in SEA is written as 817, but it should be 4817, as indicated elsewhere in the report.  In Figure 2, the legend describes the chart as depicting trends in the case detection rate among children, whereas it actually shows the numbers of cases, not the rate; the description of Figure 2 in the text is correct. In the last paragraph on p424, the first sentence seems to be incomplete.

In conclusion, the update presents a wealth of data which will be useful to policy-makers, planners and researchers everywhere.  The emphasis on stepping up preventive activities is welcome.  Data allowing anyone to calculate the CDR in children in any country, is useful to indicate the underlying level of ongoing transmission, but in future, indicators to monitor the implementation of PEP will be needed.  Data on issues such as drug-resistance, reactions, relapse, retreatment and adverse events are being collected, but at present are not complete enough to draw meaningful conclusions.  The basic indicators on disability (G2D rate, and the rate in children) and discrimination (remaining discriminatory laws) should be complemented by indicators that monitor both disability management and steps being taken to reduce stigma, at community level, as proposed in the Global Leprosy Strategy 2021-2030.

Renewal of mandate of UN Special Rapporteur

The UN Human Rights Council has renewed Alice Cruz’s mandate as UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, for a further three years. ILEP has been active in support, and we appreciate very much the leadership of the Japanese Permanent Mission in Geneva in sponsoring the extension.

The 3-year mandate now includes reporting to the UN General Assembly, as well as to the Human Rights Council. This is a significant step forward, reaching a wider audience of political leaders and policy makers for messages and reports about discrimination and denial of rights of persons affected by leprosy.

Ms Cruz’s most recent report includes a policy framework to help countries develop rights-based action plans for eliminating discrimination on the grounds of leprosy. This builds on the Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members which were adopted by the UN a decade ago. The policy framework is designed to be implemented within already existing national human rights policies and programmes. There is concrete guidance on four main areas: adequate standard of living, non-discrimination and inclusion in the community, elimination of stereotypes, and empowerment with a focus on vulnerable groups.

ILEP values the empowering effect Alice Cruz’s mandate has had on persons affected by leprosy and their family members, and the organisations that represent them. We look forward to working with her in increasing cooperation over the coming years.

People Affected by Leprosy and the COVID-19 Global Crisis

People affected by leprosy have been deeply impacted by the crisis generated by the COVID-19 pandemic. A working group of the Global Partnership for Zero Leprosy (GPZL) entitled Emergency advocacy for persons affected by leprosy hosted regional calls with 19 organisations of persons affected, as well as individuals, to gather their perspectives on their needs and challenges during the COVID-19 health crisis.

The working group found that, across geographies, some major concerns were consistently being talked about. These included access to health care, access to basic goods like food, clean water and soap, access to government support, access to stable livelihoods, access to information about COVID-19, and the impact of situations where the vulnerability of persons affected by leprosy is made worse by other vulnerabilities such as age, gender, stigma and mental health issues.

This month the working group has issued a comprehensive report which provides a depth of insight into these concerns, and includes a set of ten recommendations that NGOs and governments can take to address the needs and challenges of persons affected during the COVID-19 pandemic.

Particularly pertinent to ILEP members are recommendations about supporting grassroots organisations of persons affected in the COVID-19 context, supporting coalitions of grassroots organisations to elevate their voice, working with them to map the disproportionate impact of COVID-19 and available solutions and resources, and liaising with National Leprosy Programmes to ensure access to the continuum of care for persons affected, including access to leprosy reaction treatment, and the resumption of wound care services and self-care groups as soon as possible.

ILEP/NNN Guides on Stigma and Mental Wellbeing

ILEP Members and supporters care about stigma and discrimination. So we are proud to announce the launch of the all-new ILEP/NNN Guides on Stigma and Mental Wellbeing.

The Guides have been comprehensively rewritten to incorporate improved insights, align with current evidence, and make mental wellbeing an integral component of the series. They provide best-practice information and recommendations from various disciplines on how stigma manifests, how it can be reduced and the tools available to assess the experience of stigma and its effects on mental wellbeing. Although they focus on NTDs, the Guides are relevant for people working to address all forms of health-related stigma and promote mental wellbeing in their interventions, policies, trainings, care packages, evaluations or other services.

The complete series:

• What are health-related stigma and mental wellbeing? provides basic information about stigma and its causes and manifestations.
• How to reduce the impact of stigma, presents coping mechanisms for individuals and families at risk of stigma and provides practical tools for those who are working with them.
• How to reduce sources of stigma, focuses on interventions that can tackle the different sources of stigma in contexts such as the community, the health sector, service providers, institutions, law and policies and the media.
• How to assess health-related stigma and mental wellbeing, explains why it is important to assess stigma and mental wellbeing and describes qualitative and quantitative assessment methods and instruments. It also explains how to interpret and report the assessed findings.

Management of leprosy reactions and prevention of disability

The World Health Organisation has issued new Technical Guidance on management of leprosy reactions and prevention of disability. The guidance originated in an informal consultation in late 2018 where numerous ILEP technical specialists were involved.

The Technical Guidance provides updated and detailed guidance on critically important actions to prevent disability. Main chapters include:

• Distinction between the different types of leprosy reaction – how they present, how they are managed and the potential consequences if not managed well
• How to assess nerve function and undertake sensory testing and voluntary muscle testing, so as to recognise nerve damage as early as possible
• How to recognise early, and correctly treat, leprosy reactions and neuritis, so as to avoid irreversible nerve damage and the resulting disability. There are separate chapters for the medical management and for front-line health workers, including a useful step-by-step guide

A feature that users may find especially useful is a set of flow-charts, or algorithms, towards the end of the publication, which are a visual guide to making the right clinical decisions.

Open letter to UN member states

People affected by leprosy are among the furthest behind and are experiencing the disproportionate impact of the crisis generated by the COVID-19 pandemic. Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, has written an open letter to UN member states urging a constructive response.

Ms Cruz has gathered a considerable body of evidence about the barriers that people affected by leprosy are experiencing in terms of access to leprosy healthcare, social protections, and basic supplies (such as food, energy for cooking, clean water, soap and PPE equipment). There are particular concerns for older people living in the former leprosy colonies.

Ms Cruz outlines five fundamental principles which should guide states’ medium- and long-term responses to the crisis:

• Strengthen health systems and ensure continuous access to leprosy health-care programs
• Expand the scope of national leprosy-related programmes to include targeted action on the social determinants of leprosy
• Implement comprehensive social protection policies that guarantee full accessibility to persons affected by leprosy as well as poorly educated populations and those living in remote areas
• Build up grassroots organisations of persons affected by leprosy, as one way of ensuring that relevant information about COVID-19 or similar emergencies reaches all people
• Work as international partners to support the investment needed for the elimination of leprosy, and the right to the highest standard of physical and mental health of persons affected by leprosy, and the promotion of leprosy related human rights policies