How transformational digital technologies can contribute to Leave No One Behind in UHC: the case of rare diseases

1. ‘Rare diseases’ are ones not often seen by doctors, therefore not diagnosed and not properly treated. They affect around 400 million people worldwide. 400 diseases represent 98% of these cases, with a further 5,600 diseases making up the other 2%. Clearer definitions are needed.
2. As the distance between patients and health centres increases, quality of life and life expectancy decrease. Digital technologies could help by making distance irrelevant through virtual visits.
3. Dr Soumaya Swaminathan (Chief Scientist WHO) outlined how her division looks at new technologies, gathering evidence on emerging treatments and new technologies to see where and how countries could invest in new technologies to improve health outcomes. The vision is a global framework for rare diseases, with cloud-based data solutions, apps which identify patterns and create algorithms and accelerate diagnosis based on symptoms, social platforms where people living with rare diseases and specialised doctors can connect with each other, produce a rare disease encyclopaedia in various languages.
4. People with rare diseases and their families often experience isolation and are stigmatised in various issues including healthcare, insurances, education, social care and employment. Technology can help overcome isolation by building digital platforms to connect patients with specialists, support and expand existing networks, and allow patients to virtually participate in classrooms. Artificial Intelligence would allow symptoms to be mapped and grouped, so people are provided with accurate diagnoses. The opportunities and benefits of digital technologies should be maximised by combining efforts.
5. A panel session identified challenges and opportunities in digital health implementation:

• Self-testing/self-diagnosis become possible in diseases of high stigma
• This can be followed by treatment in the community rather than at the health centre
• Change management in the workforce is needed before the introduction of technology, especially in low and middle income countries, as it is a new form of thinking
• National digital health strategies are needed rather than piecemeal development or application

Global Action Plan for Healthy Lives and Well-being for All: a commitment to accelerating together

1. This global action plan was initiated by Germany and Norway but founded by a cluster of multilateral agencies, focused on implementation of SDG-3. See the full document or the summary for more information.
2. Primary driver: the sharp bend in the trend-line needed if the indicators for SDG-3 are to be achieved. For example an estimated 800 million in the WHO SEARO region are vulnerable to severe financial stress from out-of-pocket health expenditure.
3. In the bottom group of less developed countries, health expenditure is estimated to be around 10% of what it needs to be by 2030 to achieve SDG-3, a gap of $180b. A World Bank presentation suggested the major factors to change this picture will be:

• shift of country expenditure from lower priority items
• investment in innovation
• doubling of health-related aid

4. The key task during current consultation phase (till September 2019) is to identify accelerators – joint actions that are expected to accelerate progress and remove obstacles
5. Presentations from Ghana, Colombia and Nepal highlighted some of the challenges:

• Sustaining achievement beyond the initial burst of enthusiasm and funding
• Inequality, so focusing on median will not be good enough: disaggregated data is needed
• Effective social protection (eg health insurance) systems
• Weak HR capacity
• Political structural decisions (eg Nepal) that makes some indicators go backwards
• Inadequate data and data collection

6. There is a representative civil society advisory group which calls for clear communication and consultancy and reminds that civil society will have a crucial role when it comes to implementation.

WHO briefing on Universal Health Coverage (UHC)

1. Philippines described the experience of the enactment of a UHC law, learning from countries like Japan and Thailand that had achieved UHC earlier. Now engaged in the more detailed implementation planning and this includes anticipating and responding to obstacles.
2. Estonia described the experience of enrolling people into an insurance scheme: what was learned and how the scheme was modified to reduce the cost barrier is lower and make enrolment automatic (treating UHC as a right, not something that needs to be applied for).
3. WHO AFRO office described the Harmonisation for Health initiative which provides regional support to governments in Africa strengthening their health systems. WHO has done assessments of countries’ preparedness for UHC roll-out and pointed to useful tools. Innovation is needed in countries where roll-out of universal health insurance schemes is especially challenging.
4. The UHC Partnership promotes UHC through policy dialogue on planning, health systems governance, health financing strategies and their implementation, and enabling effective development cooperation in countries. Now working in 66 countries. For an example of its work and approach see http://www.nationalplanningcycles.org/planning-cycle/NPL
5. The head of the UHC Partnership listed what he considered ten key UHC success factors:

• Strong link between service coverage and finance
• Planning needs to be bottom-up and contextualised including bottleneck analysis
• Concrete focus on realistic measurable outcomes
• Investment in measuring those outcomes
• Disaggregated data: averages fail to reveal inequities in coverage and financing
• Health quality as a human rights issue
• Social contract with citizens is needed, since success entails their understanding
• Need for new refreshed toolbox including digital health
• Focus on the demand side, tackling issues like loss of confidence in immunization
• Investment in science to ‘learn as we go’

6. UHC2030 is a partnership of governments, international organisations, civil society organisations, the private sector, academia, and media, who have signed the UHC2030 Compact focused on UHC implementation. Key principles:

• Leaving no one behind: a commitment to equity and a rights-based approach
• Transparency and accountability for results
• Evidence-based national health strategies and leadership
• Engagement of citizens, communities, civil society and private sector, as well as government
• International cooperation based on mutual learning across countries

Highlights from the opening address of WHO Director General Dr Tedros Adhanom

1. There is encouraging progress in implementing Universal Health Coverage (UHC) were given: Kenya, India, Greece, South Africa, the Philippines, El Salvador and Egypt. UHC is the crucial element in WHO’s ‘triple billion’ strategy.
2. UHC cannot be achieved without strong primary health care (reference: the Astana Declaration, endorsed by 194 countries in 2018). Fundamental challenges in primary health care include vaccines for all, and the global shortage of 18 million health workers. This requires investment in health workforce and spread of free-to-user health service.
3. List of successes in 2018. This included the world’s first malaria vaccine, strategy to eliminate cervical cancer, the first Essential Diagnostics List, first guidelines on digital health, interagency report on antimicrobial resistance, the first global air pollution conference, trans fats elimination targets, and much more. Dr Tedros emphasised the need for action to follow the talk.
4. Major concern over the current Ebola outbreak in east DRC, already one of the world’s most dangerous places. Investment is needed to prevent emergencies, not just respond to them.
5. WHO reforms aiming at ‘one WHO’ operating model: new processes, new culture and a new approach to partnerships
6. Three takeaway messages:

• Health is about political leadership: delegates were urged to ensure that national political leaders attend the high level political forum on universal Health Coverage later in 2019
• Health is about partnerships: countries were urged to enable more flexible and predictable funding of WHO
• Health is about people: not just resolutions but implementation. ‘The people of the world will hold us accountable’

Membership Information – Survey reminders

A reminder that we have three surveys out to collect membership information.

1. WWW survey: We need your help in updating the interactive map on the ILEP website, which provides information on the different ILEP Members, what they are working on (projects) and where they are working (countries). The map was developed at the request of the membership to promote learning and collaboration, and to help target opportunities for joint initiatives. The deadline for this survey is the 1 July 2019. Data submitted in time will be used to update the map ahead of the Members’ Assembly meeting in September 2019.
2. Country Coordination survey:  ILEP is committed to working at country level with country coordinators to ensure our Member organisations are collaborating and aligning their efforts with national and global strategies to achieve a leprosy-free world. This survey is designed to update the country coordination section on the ILEP website. The deadline for this survey is 1 July 2019.
3. G-Finder Survey: In recent years, Policy Cures Research and ILEP have collected data from ILEP Members for the G-Finder report which analyses global investment in innovative research and development (R&D) for neglected diseases. The twelfth annual G-Finder survey will record your organisation’s 2018 financial investment data and can be used to report data on leprosy research as well as other NTDs that are included within G-Finder’s scope. Please note that investment into the leprosy vaccine R&D has been added to the G-Finder scope this year. The deadline for this survey is the 14 June 2019.

Please send the completed survey forms or any questions to Monty Mukhier before the deadline.

Message from the CEO – May 2019

United Nations activity in Geneva this month has been dominated by the World Health Assembly where there has been a strong focus on universal health coverage (UHC).

We provide summary reports in this Update on sessions that may interest ILEP members.

We’re delighted that Alice Cruz, UN Special Rapporteur on leprosy, has had her first official visit, to Brazil. You’ll find in this Update a summary report with links to her official statement and video. She has also received official invitations to visit India and Ethiopia. ILEP is working with Alice and the Japanese Permanent Mission to support a side event focused on leprosy during the Human Rights Council at the end of June.

Message from the CEO – June 2019

ILEP and its Members participated in two significant United Nations events in June.

At the United Nations HQ in New York, a team from TLMI advocated for human rights in leprosy at the Conference of State Parties of the CRPD, the Civil Society Forum immediately before it, and at a side event in collaboration with Disabled Persons International (DPI). One of our shared advocacy aims in these events is for the CRPD Committee to look at leprosy as disabling, not just in terms of physical disability, but also in terms of the emotional and psychological consequences of stigma and social exclusion.

Meanwhile in Geneva, Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, presented her thematic report to the UN Human Rights Council. Her report focused especially on human rights abuses affecting women and children. The ILEP Office supported the Japanese Permanent Mission and others in a side event, with Alice as keynote speaker, about how to fulfil the 2030 Agenda for stigmatised social groups.

Reports on the New York and Geneva events can be read in this Update.

Message from the CEO – July 2019

New publications, Africa Region conference and a heatwave in Europe!

Temperatures in the upper 30s are uncommon in Switzerland, so we have been either enjoying, or bearing, the heat in recent weeks. ILEP’s new office has no air conditioning but is designed for air-flow. We moved on 1 July: so far, so good.

This month’s Update spotlights a report on the recent WHO AFRO NTD Bi-Annual Programme Managers Meeting in Addis Ababa, which included a side event introducing the Global Partnership for Zero Leprosy (GPZL) country model. The resource mobilisation efforts of GPZL are also highlighted. We profile two new publications about disability and rehabilitation – relevant to ILEP Members – and a call for proposals for some interesting research on NTDs within universal health coverage.

Message from the CEO – August 2019

Leprosy is increasingly part of the CRPD Committee’s normal work and dialogue.

During August and September, the CRPD Committee (Convention on the Rights of Persons with Disabilities) has its second set of meetings for 2019. During the year, the Committee has been hearing repeatedly about leprosy. So far this year we have had:

• A special lunch briefing in March, specifically about leprosy.
• Written submissions on stigma and discrimination in seven countries.
• Lobbying done by The Leprosy Mission at the Conference of State Parties in New York.
• Inclusion of ILEP in the speeches to the opening session of the Committee in September.
• Oral interventions when the Committee is discussing specific countries (six of these in August/September).
• And one-on-one meetings with individual Committee members.

It is very pleasing to see how leprosy is increasingly part of the Committee’s normal work and dialogue.

Message from the CEO – September 2019

During September, ILEP and many people from its Member associations and partners have been engaged in important meetings in Manila and Liverpool.

In this Update you can read reflections from the Global Forum of People’s Organizations on Hansen’s Disease (Manila), the International Leprosy Congress (Manila) and the NNN Conference (Liverpool). We also report on a good outcome for leprosy in the CRPD Committee’s concluding observations on human rights of persons with disabilities in India, on the launch of the Zero Leprosy Toolkit and on exciting developments coordinating ILEP’s institutional funding in Nepal. And much more – please read on…

Message from the CEO – November 2019

In this bulletin we celebrate the launch of the Infolep and InfoNTD websites – invaluable resources for the leprosy and NTD communities. For readers interested in the leprosy sections of the WHO NTD Roadmap we share near-final extracts. There is also information on the recently announced World NTD Day. Plus, the usual round-up of developments at the Global Partnership for Zero Leprosy.

Message from CEO – January 2020

January is always a crucial month in the leprosy world, because of World Leprosy Day. I am sure we have all been impressed with the amount of social media activity in the past two months (find the ILEP social media toolkit here), especially focused on the theme of leprosy and human rights. Read more about it here.

This Update also contains reports on three important events: a high-profile national leprosy conference in Bangladesh, the release of an in-depth review of the national leprosy programme in India, and a workshop in Amsterdam working on GPZL’s implementation plan for the coming years. Each of these has the potential to be ground-breaking, and I recommend that everyone pay close attention.

Message from the CEO – February 2020

Greetings from the ILEP office in Geneva, where we are gearing up for the ILEP conference and other meetings in Brentford in mid-March. Thanks in advance to The Leprosy Mission for hosting these events.

This Update includes more information on the draft NTD Roadmap 2021-2030, pending approval in May. The Roadmap’s leprosy-specific pages will form the basis of WHO’s new global leprosy strategy. I recommend Alice Cruz’s thought-provoking report on her recent visit to Japan. Also noteworthy are the latest G-FINDER report on the funding of leprosy and other NTD research, and a recent publication on gender dynamics within NTDs.

ILEP conference cancelled?

As many readers are aware, the three-day ILEP Conference, planned for the third week of March, was cancelled due to the impact of COVID-19 round the world.

The ILEP Conference planned for March 2020 was really two conferences in one. The first half profiled 22 digital innovations being used by ILEP Members and partners in a wide range of field services. The focus was ‘show and tell’ so that people could see the technologies in action. The second half was a combination of presentations and intensive group workshops which aimed to tackle – and, we hope, identify some solutions for – the worldwide problem of loss of leprosy expertise.

Both sections of the conference were seen as high priorities by ILEP Members, and so we all regret the lost opportunity for learning together.

We are, however, discussing options for the future. One is to postpone the conference to ILEP’s scheduled meeting weeks in either October 2020 or March 2021. Another is to learn from and apply what some other organisations are doing in replacing face-to-face conferences with a combination of webinars and interactive sessions. We’ll keep you informed.

Message from the CEO – March 2020

It seems that every conversation starts with COVID-19 and checking ‘how are you’. I’m now in New Zealand and am impressed with the Prime Minister’s call for kindness, alongside good preventive behaviour. It feels like a relevant message to us in the ILEP world too, as we respond to colleagues, supporters, volunteers and people affected by leprosy expressing their individual fears and anxieties over what’s ahead of us.

Talking about COVID-19, this update includes some lessons from past viral epidemics that are relevant to those of us thinking about how to keep leprosy and NTD services running in a pandemic. We’ve also included an International Women’s Day statement from UN human rights experts, including Alice Cruz, reminding us that gender-based discrimination persists and is still too often unchallenged. We share Nepal’s experience of the IDEA International Day of Dignity and Respect 2020. There’s a notification of the launch date of WHO’s new NTD Roadmap, and a reminder that it’s not too late to apply for the 2020 NTD Innovation Prize.

Among partners, WHO reports on an informal consultation on how to verify elimination of leprosy, defined as interruption of transmission. Along with that, GPZL is looking for people with technical know-how to engage in some specific tasks.

Lastly, we explain our thinking about what to do about the cancelled ILEP Conference: reschedule? Go virtual? And we explain what’s happening with the restructured ILEP Secretariat from 1 April. Read on!