COVID-19 and leprosy

Paul Saunderson, chair of the ILEP Technical Commission, has been looking at lessons learned from the Ebola epidemic that could be applicable to leprosy endemic countries where COVID-19 is beginning to take hold.

As ILEP Members respond to the threat of COVID-19 in their home countries, they’re also starting to think about what it will mean for staff, patients and people affected by leprosy in endemic countries.

A 2014 paper from Sierra Leone shows the dramatic effects of Ebola on general health services. Admissions to health facilities for other conditions dropped 70% as the epidemic took hold, because of fear (by patients and health staff) and the closure of some facilities. Eight per cent of all medical doctors in the country died. It was predicted to be very difficult to get health services back to the levels before the epidemic.

A 2008 paper from DR Congo showcases lessons that can be applied to future lethal viral epidemics. The paper describes extreme fear by patients; psychological stress for health staff, which deepened as the epidemic progressed; isolation of health staff by their families and aggression from communities; and the emotional effects of frequent deaths of colleagues.

Finally, a 2015 article from Ghana when it was preparing for an epidemic that never came. The article highlights three major challenges: the impact of fear on the continuity of medical services; lack of protections for health staff; and confused messaging and lack of political leadership. Recommendations include establishing supplies and infrastructure for basic infection control, better protection, psychological care and health insurance for healthcare staff, and working with communities to make sure that accurate messages are being given about the disease.

We encourage readers to email their comments and any resources about the impact of COVID-19 on leprosy services.

Mexico WHO consultation report on ‘Elimination’

In March, the WHO Global Leprosy Programme held a 3-day informal consultation in Mexico City, entitled Defining Criteria to Declare Elimination of Leprosy. ILEP was represented by Dr Wim van Brakel and Geoff Warne.

In the new global NTD Roadmap, the goal for leprosy has changed from ‘elimination as a public health problem’ to ‘elimination’, defined as interruption of transmission. This informal consultation was called to discuss what criteria should be used to verify that the transmission of leprosy has indeed ceased in a country.

Two-thirds of the 40 delegates were from the Americas, bringing a valuable perspective to those of us more accustomed to the Asian and African perspective. Useful case studies demonstrated the changes in age profile of new cases, and the number of child cases, in countries where new case numbers were approaching zero and where transmission was thought to have ceased some years earlier.

One of the issues in leprosy has been that countries were able to assert ‘elimination as a public health problem’ without the need for dossiers of evidence. The process of verification of genuine elimination will require a detailed dossier supporting the country’s claim. A taskforce group will specify the standard content of the dossier and the relevant indicators. These will include epidemiological indicators, qualitative indicators of the capacity of the health and social services to provide care and promote social participation, and surveillance arrangements. The dossier is then reviewed by an expert panel, on whose recommendation WHO formally verifies elimination.

A full report on the consultation, including conclusions and recommendations, can be seen here.

New reality for the ILEP Secretariat

As of 1 April 2020, there are major changes in the way the ILEP Secretariat will function. Staff numbers have been reduced from three to two, working at opposite ends of the world.

Significant changes in the functioning of the ILEP Secretariat were decided by the ILEP Members’ Assembly six months ago and are being implemented starting on 1 April. ILEP remains registered in Geneva, Switzerland, as before, but with a reduced staff and budget.

We are discontinuing the communications officer role, which sadly means that Aliyah Esmail leaves on 31 March. The new website is almost ready for launch, but inevitably ILEP’s social media presence and other communications outputs will reduce. However, these monthly ILEP Updates will continue.

Monty Mukhier continues as full-time Administration and Finance Manager, based in a shared office in Geneva. His role is much as before, the mainstay of the day-to-day work of the Secretariat.

Geoff Warne continues as part-time CEO, based in New Zealand, but travelling and working in Europe and other places around ten weeks a year.

With personnel at both ends of the world, the Secretariat will now be ‘open for business’ almost round-the-clock and our aim is to have no reduction in responsiveness. Please don’t hesitate to contact us.

GPZL update – March 2020

Calling all technical experts! The Operational Excellence Working Group has opportunities for technical experts to engage in country programmes towards zero leprosy roadmaps; the GPZL technical support pool; support to the zero leprosy toolkit helpdesk; translate best practices into French and Portuguese; and be involved in one of the research priority groups.

GPZL’s Operational Excellence Working Group was founded to foster the development, use, scale-up, monitoring, and evaluation of best practices and promising innovations in national leprosy control programmes. This group has contributed to establishing GPZL’s Zero Leprosy Toolkit and Country Review tool in the last two years. These products will always be living products in need of regular updates, but work on them will not continue with the same intensity.

Operational Excellence Working Group activities are continuing in 2020. These activities are diverse and sometimes time-bound, and offer opportunities for people to contribute within their field of expertise, interest, and available time. Christine Fenenga, GPZL’s Director of Country Programmes, has recently described the priority areas of work in 2020 and called for people with technical expertise to engage. The priority areas of work include:

• Engagement in Country Programmes: Members living and working in countries where the GPZL engages in country support will be actively involved in various activities, such as the National Leprosy Programme review, Roadmap design, and National Action Plan development. Each year from 2020 to 2025 GPZL will engage in five or more countries, with the aim of developing Zero Leprosy Roadmaps in 30 countries by the end of 2025.
• Providing technical support as a member of the GPZL Technical Support Pool, especially to facilitate zero leprosy reviews at country level.
• Delivering support to the Zero Leprosy Toolkit helpdesk by providing expert advice about how some of the tools can be used. Support is also needed for the translation of best practices into French and Portuguese.
• Engaging with a Thematic Research Group. The thematic areas are: diagnostics; operational research issues; SDR in PEP; and stigma. The link between research and operations is key in defining relevant research questions upon which to base proposals.

Go here for more detail on these opportunities and whom to contact to express an interest.

IDEA International Day of Dignity and Respect

IDEA’s International Day of Dignity and Respect was celebrated in Nepal on 11 March. Two members of ILEP’s Advisory Panel were involved: Rachna Kumari as special guest and Amar Timalsina as lead organiser.

The International Day of Dignity and Respect is an important feature on IDEA International’s annual calendar. The day was celebrated in Nepal by a programme held at the conference hall of the Nepal Bar Association, organised by IDEA Nepal. There were more than 100 guests.

Rachna Kumari, a member of ILEP’s Advisory Panel, was a special guest and was recognised in the programme for her contribution in the field. She shared the story of her victory against leprosy, a story which moved and encouraged the many women affected by leprosy who were present. Several other people were also honoured for their years of dedication towards the wellbeing of people affected by leprosy.

The programme was covered by the national media including TV and newspapers. It was supported financially by a leading Nepali bank and by IDEA International.

Alice Cruz joins UN statement on International Women’s Day

“No country in the world is free from discrimination against women … The time to act is now”. UN experts associated with the Human Rights Council – including Alice Cruz, Special Rapporteur for the elimination of discrimination against persons affected by leprosy – spoke out on International Women’s Day to urge men and boys to become women’s rights defenders.

“Women’s and girls’ activism and autonomous movements have been the driving forces behind the advancement of women’s human rights and gender equality and remain ever essential,” said Meskerem Geset Techane, Chairperson of the UN Working Group on discrimination against women and girls. “But … responsibility for progress cannot continue to lie solely on the shoulders of women. Men and boys need to stand with women and girls as allies in the fight for gender equality and demand an end to impunity and accountability for violations of women’s rights and access to justice.”

In the statement, the UN human rights experts said that much has been accomplished since the UN’s proclamation of International Women’s Day in 1977, but that progress remains insufficient. “Today, no country in the world is totally free of discriminatory practices and discriminatory laws still exist in many places,” said the statement. “Discrimination against women and girls persists and is too often unchallenged or normalized. Discrimination lies at the heart of every issue faced by women regardless of their identity or status. It operates in all spheres of women’s lives and is by no means accidental; discrimination is indeed political and systemic.”

The experts underlined the importance of adopting an intersectional approach to gender discrimination in order to understand and adequately respond to the unique forms of discrimination generally experienced by women on account of race, ethnicity, national origin, religion, sexual orientation, age, and disability status among others.

The UN experts said in their statement that “discrimination against women and girls is a human rights violation which must not be tolerated …  The time to act is now. Structural causes for inequality and deeply entrenched discriminatory attitudes and practices must be tackled in order to achieve gender equality and a sustainable future for all.”

See the full statement

NTD Roadmap 2021-2030 launch date

WHO announced that it plans to launch the new NTD Roadmap virtually on 17 June 2020. There may also be launches specific to regions, countries, or different audiences.

We have informed Update readers about the progress of the 2021-2030 NTD Roadmap. WHO has set a date – 17 June – for the official launch, which will take place virtually. WHO is inviting partners to actively support this virtual launch in as many ways as possible to amplify the messaging of the Roadmap and to mobilise their collaborative efforts,

The launch date, and WHO’s leadership in it, were broadly welcomed by funders and other stakeholders. ILEP is liaising with NNN (the NGO NTD Network) about ways to support the launch.

Uniting to Combat NTDs (UTC) with its partners had been coordinating a Roadmap launch at the Kigali Summit on Malaria and NTDs on 25 June. This was to be held alongside the Commonwealth Heads of Government Meeting (CHOGM) but the whole event may be cancelled due to COVID-19. UTC has been exploring alternatives. We will keep readers posted on all developments.

2020 NTD Innovation Prize

The NTD Innovation Prize encourages creativity and ingenuity in addressing NTDs. There are two prizes in 2020, worth a combined $35,000. Applications close on 30 April.

The NTD Innovation Prize is designed to encourage and support creativity and ingenuity in addressing neglected tropical diseases (NTDs) and to fund new ideas that could result in cost-effective, scalable and transformative impact. In 2020, American Leprosy Missions is partnering with Novartis to offer a first prize of up to $20,000 and another of up to $15,000.

This contest focuses on ideas that apply a new approach, tool or method to a persistent challenge, aligning with the BEST framework’s strategic domains of Behaviour, the Environment, Social inclusion and equity, and Treatment and care. Cross-cutting themes related to data and analytics to support access to information and inform decision making are also encouraged.

Applications are due on 30 April 2020, and prizes will be awarded at the 2020 NTD NGO Network (NNN) Conference in September in Kathmandu, Nepal. For more information and to apply, please visit the NTD Innovation Hub.