ILEP meetings, Brentford, June 2022

Meeting in person again after almost three years was a deeply positive experience. ILEP member The Leprosy Mission welcomed to Brentford, in west London, the ILEP Technical Commission (ITC), the ILEP Advisory Panel, and the ILEP Members’ Assembly. Each of these groups met for two days. These were the first face-to-face meetings since the current ITC and Panel were appointed. For the Members’ Assembly, it was notable that more than a third of Member CEOs had been appointed since we last met in person.

The ILEP Technical Commission programme included a one-day symposium on phases towards the elimination of leprosy disease, how these phases apply in lower-endemic settings, and the implications for the design and implementation of leprosy programmes. This included presentations from WHO and from numerous countries where leprosy is already low-endemic. A report from a comprehensive literature review published in 2021 demonstrated the very low likelihood of ongoing transmission of leprosy, or a resurgence, once incidence is reduced to just sporadic cases.

The ILEP Advisory Panel was diminished by the fact that four of its seven members did not receive visas in time. Nevertheless, in addition to their regular agenda, Panel members were able to participate in a parliamentary meeting of the UK Coalition on NTDs. Rachna Kumari’s speech on the occasion is here.

The ILEP Members’ Assembly, in addition to its regular meeting, had a one-day CEOs’ Summit devoted to conversations about the projects to be funded from the ILEP Project Reserve, coordination and collaboration in endemic countries, and putting the ILEP strategy into operation. The four projects to be funded from the ILEP Project Reserve, plus supplementary contributions by some ILEP members, are listed in the following table:

The Member CEOs also agreed to appoint one Member association as the lead agency for each of the five strategic goals, with several other ILEP Members listed as participants. The working groups and lead organisations are in the following table:

UN Special Rapporteur and the right to health

This month, UN Special Rapporteur Alice Cruz delivered her annual report to the UN Human Rights Council. The report, entitled Right to the highest attainable standard of physical and mental health for persons affected by leprosy and their family members, is available here in English, French and Spanish.

Ms Cruz’s report points out WHO defines health as a state of complete physical, mental and social well-being, and the Universal Declaration of Human Rights connects health and well-being to a dignified and secure standard of living, encompassing access not only to food, clothing and housing, but also to medical care and social security. Yet the biomedical approaches that prevail in national health systems dramatically narrow these definitions to disease-centred approaches that often involve unequal power relations, especially for traditionally stigmatised groups such as persons affected by leprosy.

National leprosy programs typically equate cure with the completion of a course of treatment. But many persons affected by leprosy say that, even though health-care workers say they are cured, they do not feel healed. They point to a different reality: ongoing leprosy reactions, a lifelong risk of disabilities caused by nerve damage, and the cruel reality of stigmatisation and social exclusion. Yet the health system classifies them as ‘treatment completed’ and often fails to provide the physical and mental health and disability services that they need to live a healthy life. As a woman interviewed by Ms Cruz said: ‘Stop saying that this disease is curable! It is not! One cannot ever go back to living a normal life.’

In order to understand these issues from their perspective, the Special Rapporteur issued a comprehensive survey which attracted responses from 174 people with personal experience of leprosy living in 31 countries. Their responses demonstrate that a new, bottom-up narrative is needed. This involves healthcare systems adopting a people-centred approach in which those who have experienced leprosy are active participants in interpreting the right to health from their perspective. As the research shows, this perspective is typically around what it means to enjoy opportunities in life on an equal basis with others, without discrimination and violence, accessing the health-related services that they need, when they need them.

ILEP supports the Special Rapporteur’s report and the wide-ranging recommendations included in it. ILEP supports her call for national consultative committees that enable people affected by leprosy to be at the centre and to articulate what the right to healthy lives really means for them. Notably, this will include not only access to basic services such as MDT treatment, but also access to ongoing services that tackle the physical and mental complications of leprosy, and to activities that ensure their human rights are respected. ILEP joins the Special Rapporteur in calling on Member States to adopt country-owned political agendas that not only combat leprosy as a disease, but equally protect, promote and fulfil the rights of people affected by leprosy to the highest attainable standard of physical and mental health.

Launch of WHO Skin NTDs Strategic Framework

The WHO Skin NTDs Framework was launched this month. A companion document to the WHO NTDs Road map 2021-2030, the Framework centres on integrated approaches to the control and management of nine NTDs, including leprosy, that involve effects on the skin. From ILEP’s perspective, the logic is that people-centred, multi-disease approaches are a more efficient and effective way of ensuring people affected by leprosy obtain the services and supports that they need. These approaches are already demonstrated by joint programmes being implemented by ILEP members or partners in several countries.

WHO encourages countries to adapt the Framework to plan and implement integrated strategies based on the endemicity of Skin NTDs and other skin conditions. The potential areas for integration are very broad, ranging from prevention to case-finding, laboratory diagnostics, treatment, self-care, management of complications, rehabilitation, social inclusion and human rights, capacity building and training, surveillance and more. From the zero-leprosy perspective, this breadth of focus is important. ILEP’s vision is not only zero transmission of leprosy, but also zero disability and zero stigma and discrimination. Similarly, ILEP welcomes the focus on empowering persons affected by skin NTDs and their family members, giving them greater participation in decisions and actions that affect their health and all aspects of their wellbeing.

ILEP members were well-represented on the Framework’s review panel and in providing written input into the consultation drafts. At the launch event on 8^th June, ILEP was invited to speak about integration with other skin NTDs on the path to zero leprosy. Representing ILEP, Geoff Warne (CEO) commented that an integrated approach is effective where there are commonalities between diseases and where there are recognisable advantages for each disease.

Four of the ways integration can help towards zero leprosy seem especially promising:

• Joint programs for active case detection and for contact tracing
• Detailed integrated mapping using some of the advanced mapping tools available
• The whole group of essential services around the management of disease complications, disability prevention and social inclusion
• Joint approaches to capacity development and training

But ILEP also recognises that integration carries with it some risks for leprosy.

• The risk of erosion of leprosy expertise. This especially important given that leprosy can be a difficult disease to diagnose and manage
• The risk of overloading health workers, so that leprosy – which they may not see very often – gets forgotten again
• The risk that leprosy is regarded only as a skin disease, so that the importance of nerve function assessment for accurate diagnosis and treatment is completely forgotten, and the need for instruction in disability prevention is neglected or overlooked
• The risk of loss of focus for donors and partners committed to leprosy

WHO advises countries to think carefully about the potential for integration in their particular context, and how integrated approaches might provide opportunities to mobilise, share and pool resources. ILEP’s perspective is that countries planning integrated approaches need to do so in a thoughtful way that analyses what the gains will be and how the downsides or risks can be reduced or avoided. ILEP members should expect to be called upon to support such planning processes in endemic countries.