NTD Roadmap 2021-2030 to incorporate consequences of leprosy

ILEP, in association with the NNN (NGO NTDs Network), has been advocating to make sure that the new NTDs Roadmap fully incorporates the ongoing consequences of NTDs like leprosy.

While we recognise the enthusiasm to see a 90% reduction in the number of people suffering from NTDs worldwide, we need to ensure that consequences like ongoing disease management, disability and social exclusion are not overlooked.

Paul Saunderson (ILEP Technical Commission) and Geoff Warne (ILEP CEO) have also collated input from ILEP Members into a proposed leprosy-specific section of the Roadmap. We strongly support Erwin Cooreman (Head of WHO Global Leprosy Programme) in working to ensure that the result is a credible and usable Roadmap for leprosy, as well as all other NTDs, and that the new Global Leprosy Strategy fully synchronises with it.

Updated list of discriminatory laws

In order to track progress towards the goal of Zero Discrimination and Stigma, ILEP has reviewed and updated the list of discriminatory laws found worldwide. 

The current list shows a total of 139 laws that discriminate against people affected by leprosy in 24 countries. Most of the laws on the list (37%) segregate and isolate people affected by leprosy from their communities and even their families. India has taken significant steps in restoring the fundamental rights of people affected by leprosy, as several laws have been repealed during the past years — four in 2016, six in 2018 and two in 2019.

However, there are still 108 laws (44% of the laws worldwide) and regulations in India discriminating against people affected by leprosy. The full list of discriminatory laws can be found here.

ILEP hosts a booth at the ILC

From September 11 to 13, ILEP will be at its booth at the International Leprosy Congress (ILC). We hope that you’ll come and visit us!

ILEP would love to showcase the breadth of work that is going on in the Membership so if you have materials that you would like to add to the table, please let us know. Drop off for materials will be at the Philippine International Convention Center (PICC) on September 10 from 17:00 to 19:00.

Other organisations with booths at the ILC include: Global Partnership for Zero Leprosy (GPZL); The Leprosy Mission; Lepra; InfoLep; Leprosy Research Initiative; and the International Association for Dignity, Integration and Economic Advancement (IDEA).

The Path Ahead for GPZL’s Resource Mobilisation Efforts

Resource mobilisation is a key part of the function of the partnership, and GPZL is actively working to increase the alignment of existing leprosy funding and to identify and secure new funds. A partnership and resource mobilisation strategy is being implemented, with strategic guidance from the GPZL leadership team and senior fundraising experts. Funding opportunities will be identified, and collaborations developed around both the Zero Leprosy Research Agenda priorities and the National Zero Leprosy Country Model scale-up.

During its inaugural meeting in Colchester, UK, the Leadership Team articulated core values for advocacy and resource mobilisation. They noted that the strategy must focus on bringing additional resources and leveraging existing resources where feasible. Funding to ensure the successful implementation of the GPZL’s common goals, outlined in the research agenda and toolkit, will be a priority. The GPZL will not take funds away from existing efforts nor compete for funding with its members. The GPZL will focus on funding for shared, new priorities including advocating for the importance of additional resources to those working in leprosy (including government agencies and NGOs). Many GPZL member organisations will be valuable technical assistance leaders in strategies to get to zero leprosy.

Funding for the research agenda’s priorities is a major focus. Unlike other neglected tropical diseases like Lymphatic Filariasis and Schistosomiasis, which had a single donor agree to fund a complete research agenda and to convene the group preparing that agenda, leprosy research has not received long-term, large scale funding from a single donor. However, key research priorities can be developed as stand-alone protocols and can also be inserted into larger implementation proposals as critical research questions.

Funding for implementation of the country model is also important. The GPZL is currently working on an application to the Audacious Project and Grand Challenges Canada. They are also finalising a proposal to the MacArthur Foundation’s 100&Change project. This proposal, being developed with the Leprosy Mission International and interested ILEP Members, proposes to work with eight countries to reduce leprosy transmission by 50% over five years while promoting human rights and inclusion through peer-to-peer initiatives led by members of IDEA and global associations of persons who have experienced leprosy. Together these activities would result in achieving the WHO global target of no child cases by 2030.

Reposted with permission from The Global Partnership for Zero Leprosy – originally published 24 July 2019 here.

The missing billion

A billion people around the world who live with disabilities are being left behind without access to healthcare.

The London School of Hygiene and Tropical Medicine has issued a major publication on access to health services for the billion people worldwide living with disabilities. The report argues that SDG 3, Ensuring healthy lives and promoting well-being for all at all ages, cannot be achieved without better efforts to make sure persons with disabilities have access to healthcare. There are some sobering statistics. Persons with disabilities are:

• 3 times more likely to suffer from diabetes;
• 2 times likelier to suffer from HIV/AIDS; and
• 50 times likelier to incur catastrophic health expenditures.

The report urges organisations such as ILEP Members to ensure that in all of our services, programmes and training, we make sure that we are reaching, and not excluding, persons with disabilities. We should ask ourselves, for example, whether there are any barriers that prevent leprosy case-finding and contact tracing activities from reaching persons with physical, sensory or intellectual disabilities. Or factors that limit access by persons with disabilities to treatment centres, rehabilitation or community development programmes. The report can be found here.

WHO Africa Region NTDs conference

ILEP representatives participated in the meeting of NTD programme managers in Addis Ababa in July.

The three-day meeting started with a review of progress on the WHO Roadmap on NTDs from 2012-2020, and went on to look at progress in devising the new 2021-2030 Roadmap. Special topics were also discussed: domestic financing, information systems, laboratory strengthening, disease management and disability prevention.

In the AFRO Region, NTDs are categorised into the PCT (preventive chemotherapy) group and the CM (case management) group. It was good hearing Dr Mwele Ntuli Malecela (director of the WHO global NTDs department) point out that this categorisation needs to change, since NTDs like leprosy have both preventive and case management elements.

Benedict Quao (Ghana), Christian Johnson (FRF) and Geoff Warne, all of whom are on the leadership team of the Global Partnership for Zero Leprosy, led a side event on GPZL’s country model for zero leprosy. This was well attended by francophone and anglophone programme managers, with a very productive Q&A session. I appreciated how welcome partners are in consultations in this region.

For more on the country model, visit https://zeroleprosy.org/about-the-partnership/country-model/. The model was recently piloted in Nepal, and there’s an initial report on that experience at https://zeroleprosy.org/mission-to-nepal/.

Rehabilitation in health systems: a guide for action

A new publication from WHO advises countries on how to strengthen rehabilitation in health services. ILEP Members involved in rehabilitation are advised to take note.

This month, as part of the Rehabilitation 2030 initiative, WHO published Rehabilitation in health systems: guide for action. It offers a four-phase process for countries wanting to improve their rehabilitation systems as part of general health systems strengthening:

• Assessing the rehabilitation situation in a systematic way;
• Developing a rehabilitation strategic plan;
• Establishing monitoring, evaluation, and review processes, including targets and indicators; and
• Implementing the strategic plan, and building capacity to improve it over time.

ILEP Members working in rehabilitation should be aware of this Guide, as countries will be encouraged to implement it. The publication can be found here, and I draw your attention to the overview on page 6 and the brief summary of the four phases on pages 7-11.

Inclusion of NTDs in Universal Health Coverage: call for research proposals

The NTD Support Center has invited proposals for operational research on how to include NTDs within Universal health coverage (UHC) in national health systems.

UHC is one of the cornerstones of the Sustainable Development Goals. The core principle is that all people have access to and use the quality health services they need, without incurring financial hardship. NTDs need to be included as part of UHC in countries where these diseases are endemic and where people will live with NTD-related disability long after elimination certification. Presently, the NTD programme exists as a standalone vertical programme in many countries. The RFP will contribute to an understanding of how we move from vertical programming for NTD control and elimination to the integration of NTDs within the standard package of care delivered at the primary health care unit. Strengthening the existing health system to be able to incorporate NTD programming into their regular activities is integral to this process.

Information about the call for proposals and how to apply can be seen here.

Meet Dr Ann Aerts, Head of the Novartis Foundation

Interviewed by Andie Tucker

from Global Partnership for Zero Leprosy Communications

Dr Ann Aerts leads the Novartis Foundation. She has been a catalyst in the formation of the Global Partnership for Zero Leprosy and a key adviser to the partnership. We spoke to her about the foundation’s contributions to innovations in the field of leprosy, and the steps needed to realize our goal of zero leprosy.

When did you first start working in the field of leprosy?

I started working in leprosy when I joined the foundation in 2013. Prior to joining the foundation, I had been working in several other infectious diseases and had particularly done a lot of work in tuberculosis, which is similar to leprosy given that they are both caused by Mycobacteria.

Why are you personally committed to working to the goal of zero leprosy?

Zero leprosy is a very compelling goal because, on the one hand, we know that we have reduced the problem by about 99% and we also know it is realistically feasible to get to zero leprosy, as we did so in most of the western world. Eliminating leprosy is a truly noble goal because this disease is so challenging, leaving people disabled for the rest of their life, even if they are cured from the infection. And such disabilities make life really difficult, because it still often leads to social exclusion. That is why I believe zero leprosy is what we have to aim for: not only as we have almost reached the goal, but also because it is proven to be feasible, even with the tools we have now, although some new tools may accelerate the process.

You personally were very engaged in creating this partnership. Why did the foundation feel that the creation of a partnership was necessary to reaching this goal of zero leprosy?

The launch of a Global Partnership for Zero Leprosy was absolutely necessary and I’m so happy that it came to fruition. When I joined the foundation I realised that, in contrast to most of the former global health partners I had been working with, like tuberculosis, malaria or AIDS, who were very much working together and aligned on their goals, the leprosy community was not aligned and working rather in independent ways. Each group had different agendas, and different funding streams, for different goals, without anyone bringing all these wonderful visions together. We need to reduce stigma and we still need to support rehabilitation of disabilities, but if we really want to eliminate leprosy, we have to align behind the single goal of interrupting transmission and prevent any further persons being affected by leprosy.

Declaring leprosy already eliminated as a public health problem, was shouting victory before its time, and that also posed a problem. It didn’t result in further reduction of the disease, and it merely eliminated interest and funding for leprosy, leaving a dissipated leprosy community. That’s when, six years ago, I set a goal for us at the foundation that we would work on interrupting transmission. The first thing we did to establish that new strategy was to bring all the leprosy experts together and ask the question, what should we do with the current tools we have to eliminate leprosy  and which new tools should we start developing if we want to accelerate our goal? That meeting in 2013 was really crucial and built consensus around our 4 pillar strategy, including the need to translate evidence into practice (the reason behind our launch of the multi-country Leprosy Post-Exposure-Prophylaxis programme, LPEP), as well as the need to accelerate diagnosis of leprosy. Getting the whole community aligned behind that was truly nice.

What do you think are the most promising tools to help end leprosy?

I firmly believe that the most promising tool we have to fight leprosy and to achieve zero leprosy is early diagnosis and prompt treatment. The multidrug therapy and its widespread free availability for leprosy patients is the main tool we have to eliminate the disease, and it has proven to work very successfully in reducing the leprosy burden by 99%. To cover the last miles, it is however essential to do things differently as we saw the incidence, or new case detection rates, rather stagnating now over the past 10 years.

For me, the main aspect we have to change is the way we diagnose leprosy. Currently diagnosis is mainly based on symptoms, meaning that a skilled health professional is needed. That is a major obstacle, because there’s an enormous shortage of health care personnel in the world, and also leprosy expertise has largely disappeared since the disease has become so rare. We have to facilitate diagnosis, and that’s why we set out here at the foundation to develop a state-of-the-art diagnostic test where we can really have an objective diagnosis. We won’t get there perfectly at first, but we have some great starts.

A video from Microsoft about the development of a diagnostic tool, created in collaboration with the Novartis Foundation, uses AI and cellular technology to accelerate leprosy diagnosis.

Secondly, we set out to accelerate diagnosis with the main transformative tool we have currently at our fingertips, which is digital technology. Using digital health to diagnose leprosy with images, augmenting that with artificial intelligence (AI), will hopefully significantly help to accelerate diagnosis. If people can understand the probability of having a leprosy diagnosis themselves, thanks to an easily accessible digital tool, it will eventually accelerate the start of treatment and decrease stigma for patients, accelerating PEP for contact persons. This can make the path to cover these last miles very different.

We validated a digital image tool in the Philippines, where images are sent to a reference dermatologist or neurologist, for their opinion on whether the pictured skin lesion can be leprosy, and whether the patient should be referred for treatment. That image recognition can now be augmented with AI, so we are building the proof-of-concept for such a diagnosis accelerator with Microsoft. I hope this will become successful, but it’s also not a given yet, as building this is not so easy. We will however be very happy when we can make this available at large.

Finally, the most powerful tool we have is the treatment for leprosy. It doesn’t make sense to accelerate diagnosis without having an efficient treatment.

What other ways has the Novartis Foundation supported innovation in the leprosy field?

LPEP, the Leporsy Post-Exposure Prophylaxis Programme, is a great example how, in an innovative way, many partners pulled in the same direction, giving hope to patients and people affected. In 2013, we started LPEP throughout eight countries, based on evidence from a randomised control trial that you can administer a very simple preventative treatment with a single dose of one of the three leprosy treatment drugs in MDT: Rifampicin. Single-dose rifampicin can prevent the disease among close contacts of persons of recently diagnosed with leprosy in more than 50% of cases. The Novartis Foundation committed itself to demonstrate to the world that it is feasible and that it can curb the incidence downwards again. For more than ten years, we saw the stagnation of 200,000 to 250,000 newly diagnosed patients each year, while everybody was waiting for the elimination to happen by itself. With the implementation of LPEP, which was a massive investment for the Novartis foundation, leprosy post-exposure prophylaxis was proven successful.

The second innovation we’ve brought to the field is preclinical validation of a molecular diagnostic test. This digital image recognition tool using AI is an innovation we have spurred together with Microsoft that we are going to make into a way to accelerate diagnosis.

As explained before, probably the most important innovation taking a new collaborative approach is the Global Partnership for Zero Leprosy. I feel the Global Partnership is bringing the agenda forward. This is the momentum we need to see happening, and now is the right time for the Novartis Foundation to support phasing out of leprosy. The Novartis company will continue working with the leprosy community, and the Novartis Foundation is going to focus on new activities. Clearly, as a doctor, the fight against leprosy will stay close to my heart always.

Your vision and foresight helped to create the partnership. What are your hopes for the work the partnership leads in the future, and what would you like to see happen in the world of leprosy?

My main hope for the Global Partnership and the whole leprosy community is that they can declare leprosy eliminated at a certain point in the future. That will not happen next year, but if we all work together and keep to an aligned agenda of implementing evidence, we will get there.

Reposted with permission from The Global Partnership for Zero Leprosy – originally published 6 June 2019 here.

Mental Motivators – Tackling the Mental Health Problems of Leprosy

By Lepra UK

Why Mental Health Matters

Mental health issues are not something that can immediately come to mind when you think of leprosy or lymphatic filariasis diagnosis. Many people may see the physical effects of the disease first without considering how they affect someone with these diseases.

Yet 53% of people who receive a diagnosis of either are also affected by a mental health problem before, during and after the process of confirming their illness. These can include depression, anxiety and self-esteem or body related disorders. These can also be hidden away, just as their physical symptoms may be.

Indeed, the risk factors for mental health problems are much higher for someone who is or suspects that they may be affected by leprosy or LF.

They can be keenly aware of very real prejudice and discrimination, scared of potential disability or what their friends, family and neighbours will think.

Add in concerns over educational, employment, residential or even relationship consequences, and it is easy to see why the numbers of people in this situation also suffering from a mental health problem are so high.

This can be worse in places like Bangladesh, where provision for mental health support after a diagnosis can be harder to come by locally. With no-one to talk to about their condition or fears, this can lead to people feeling isolated, taking less interest in self-care, exacerbating the physical symptoms and even developing suicidal thoughts.

Introducing Mental Motivators

Mental Motivators is a new project aiming to improve mental health provision as part of our existing self-care groups. As well as supporting people to look after their physical symptoms, we are giving them the opportunity to learn basic counselling skills including empathy, listening and navigating the health systems available.

These Mental Motivators can then support people who have indicated they would like someone to talk to and actively find group members who are becoming withdrawn, quiet or upset, all tell-tale signs that a mental health issue may also be part of their condition.

While helping people with their worries and concerns about their diagnosis or symptoms, the Mental Motivators can signpost to appropriate education and employment opportunities, as well as any governmental support that they may be entitled to but are not receiving.

Mental Motivators are supported by local medical professionals who can step in where an individual requires more specialist help. Lepra also support our volunteers and staff to ensure that their own well-being is being protected, and helping them with their own mental health.

By becoming a Mental Motivator, people improve their prospects while helping others to improve theirs. This can give them valuable experience they can use in their day-to-day lives, or to help them secure employment.

Mental Motivators begins in June. We are very excited to update you, over the coming months, on how this important project is improving the lives of people affected by leprosy, LF and mental health conditions in Bangladesh.

Reposted with permission from Lepra – originally published 16 May 2019 here.

GPZL update – June 2019

Julie Jacobson (formerly Gates Foundation) has been contracted by the GPZL Secretariat to help identify and design approaches to potential new major donors for zero leprosy. The focus is to fund the Research Agenda (that is, the consensus set of research priorities for leprosy) and for country-based zero leprosy plans. The Secretariat is entering conversations with 10-15 organizations that she recommends for consideration, in consultation with the Resource Mobilization Working Group.

The GPZL Secretariat is also leading on a proposal to the MacArthur Foundation 100&Change competition, a $100 million grant to fund a single proposal that promises real and measurable progress in solving a critical problem of our time. We believe that leprosy is such a critical problem. The proposal involves several ILEP Members coordinated by TLMI, who hosted a two-day planning meeting in June. It will focus on two key elements: a scaled-up multi-country PEP (post-exposure prophylaxis) roll-out, combined with a major focus on human rights, particularly on building capacity of persons affected. The Secretariat is also looking at economic modelling to show costs and impact of zero-leprosy strategies, as part of a compelling investment case for GPZL.

The situation of children affected by leprosy represented globally

As part of its global advocacy strategy to mainstream the rights of persons affected by leprosy within the disability rights movement, The Leprosy Mission International (TLMI) took part in the Civil Society Forum (CSF) and the Conference of the States Parties (CoSP) to the convention on the rights of persons with disabilities for the second consecutive year in June 2019.

Brent Morgan, International Director of TLMI and member of ILEP, was one of the civil society speakers to address the CSF on the deprivation of liberty in the case of children affected by leprosy. He highlighted barriers faced by persons with leprosy related disabilities and psychosocial disabilities in accessing the rights guaranteed by the Convention on the Rights of Persons with Disabilities. He also showcased some of the preferred practices in addressing stigma and discrimination, such as participation, non-discrimination and accountability.

Amar Timalsina, President of IDEA and a member of the TLMI delegation, spoke about the efforts made by his organisation in sensitising Nepal’s provincial government assemblies to the rights of persons affected by leprosy-related disabilities.

Brent, as one of the few civil society representatives chosen to address the Conference of State Parties (the national governments that have ratified the CRPD), emphasised the importance of developing the capacity of UN agencies in disability inclusion. He also suggested measures to incentivise UN Country Teams to promote disability-inclusive United Nations Development Assistance Frameworks at the country level.

Leprosy at the 41st Human Rights Council

In her capacity as UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz delivers a report each year to the UN Human Rights Council.

This year her focus was women and children affected by leprosy, and how gender and youth compound the stigmatisation that so often results from leprosy. Evidence is crucial, and Alice’s findings were informed by more than 500 responses to the survey sent to ILEP Members and persons affected by leprosy earlier in 2019. We thank those ILEP Members who took time to respond. Her report is here and I particularly draw your attention to the recommendations at the end, which are directed not only at states but also at NGOs.

ILEP also supported a side event, organised by the Japanese Permanent Mission, in which Alice was the keynote speaker. The theme was Leprosy, dehumanisation and extreme vulnerability: How to fulfil the 2030 Agenda for stigmatised social groups. A particular highlight was testimony from two people with personal experience of leprosy: Rachna Kumari works for Lepra India and is a member of ILEP’s Panel of Women and Men Affected by Leprosy, and Faustino Pinto works with MORHAN, the Brazilian organisation of persons affected by Hansen’s Disease. There was a very supportive message from the High Commissioner for Human Rights, and both Takahiro Nanri (Sasakawa Health Foundation) and Geoff Warne (ILEP) took part in a panel discussing the issues. Around 75 people attended, and it was encouraging to hear ten Permanent Missions speaking about their commitment to leprosy. See the live tweets about the event here. Rachna and Faustino also joined Alice for a valuable meeting with the Deputy High Commissioner.

Fontilles’ Historical Portal

Earlier this year, Fontilles launched a Spanish portal and an English overview dedicated to the history of their organisation.

Historical archives, developed by Fontilles and the University of Alicante in collaboration with the Sasakawa Health Foundation, are meant to increase leprosy’s historical resources in Spanish with Fontilles and other former leprosaria in Latin America through the Cervantes website.

The project had the double goal of protecting Fontilles’ heritage and presenting that legacy to society, as an example of the struggle against social exclusion in the 21st century. The project has historical and scientific value, as it showcases over a hundred years of work carried out by Fontilles in Spain in the fight against leprosy. It reflects and collects on all of the social, economic, cultural and religious elements of the history of Spain during this period of time. Fontilles firmly believes that this legacy, as well as the legacy of many other leprosaria around the world, aid in the fight against all kinds of discrimination and social marginalisation, whether caused by leprosy or not.

Meet Dr Ibtissam Khoudri from Morocco’s Ministry of Health

Interviewed by Jessica Cook and Andie Tucker, Global Partnership for Zero Leprosy Communications

Dr Ibtissam Khoudri leads the leprosy programme in Morocco’s Ministry of Health and is a chairperson for the Operational Excellence working sub-group 5 on infrastructure and operational capacity. The communications team from The Global Partnership for Zero Leprosy (GPZL) spoke to her about Morocco’s success in reducing leprosy, the critical issues countries face in trying to get to zero leprosy, and how the partnership’s work can help.

What is your background and how did you come to work in the field of leprosy?

I am a dermatologist and also have degrees in epidemiology and biostatistics. I worked as a dermatologist in an endemic area of Morocco and then moved to the Ministry of Health, where I have been leading the leprosy control programme for the last six years.

As a dermatologist, did you see many patients with leprosy?

I was working in an endemic area in Morocco, so in this city we had cases of leprosy. Overall, Morocco is a low-endemic country, so I saw about five cases per year. During that time, I also had experience doing contact surveillance. We had a strong system of contact surveillance there.

Since 2012, the number of cases of leprosy in Morocco has declined by more than 16 percent per year. What do you think is the key to Morocco’s success? 

In the last several years, Morocco invested in a strong surveillance system, which is better at following up with new cases. Contact tracing is one explanation for Morocco’s success. At a national level, we have been implementing single-dose chemoprophylaxis for household contacts since 2012, and in the last year, demonstrated a clear decline in the number of new cases.

Also, since the implementation of WHO’s protocol in 2006, our government has made significant changes, allowing for better geographical access to health care, early case detection and treatment, and a long duration of treatment. The training of health care workers and the integration of leprosy control services in primary health care services has helped a lot. The improvement of socio-economic conditions has also helped reduce leprosy here.

You lead the Operational Capacity sub-group in our Operational Excellence working group. What kind of work is the group doing?

Our group looks at cross-cutting issues in leprosy, like human resources, finance, evaluation, surveillance and policy. We’re developing a list of best practices that can really help countries that want to move to zero leprosy.

Sharing experiences — real and practical experience from countries — is needed.

There is a need to identify practices that have demonstrated results and to share them with each other.

What do you think are the most important issues for national program managers in leprosy? 

The big issue is how to make early detection of cases possible, and putting a system in place that can follow up with registered cases. More than 60% of new cases are from household and neighbour contacts in Morocco. We need to follow-up with contacts to detect new cases early and help people get treatment. It would also be helpful to document any cases of antibiotic resistance.

The Global Partnership for Zero Leprosy will partner with national programmes on country reviews and road maps. How can we best support national programmes?

The country reviews and the creation of strategic road maps are important for high- and low-endemic countries. For a low-endemic country like Morocco, leprosy is no longer a priority, yet the country still is not at zero leprosy. In situations like this, we need to show national governments how we can maintain activities, perhaps integrating these activities in other NTD programmes. The road map can make clear the activities that are still needed and can give direction for next steps. The ambition is there—we all want to move toward zero—but how? It’s not always clear for countries. This is what the country review and road map can provide.

Reposted with permission from The Global Partnership for Zero Leprosy – originally published 6 May 2019 here.

ILEP at the 72nd World Health Assembly

We have written short précis on four topics that may be of interest to ILEP Members.

• The speech of WHO Director-General, Dr Tedros, in the WHA Opening Session referred to Universal Health Coverage, primary health care, reforms to the WHO, and three key takeaway messages for delegates. See a summary report here.
• WHO delivered a briefing on Universal Health Coverage, which is considered fundamental if the world is to achieve SDG 3. This included coverage of the UHC Partnership and the UHC 2030 initiative. See a summary report here.
• ‘Global Action Plan for healthy lives and well-being for All’ is a WHO strategy for UHC being carried forward by some of the large multilateral organisations. See a summary report here.
• WHO delivered two briefings on digital technologies in health, one focused mainly on rare diseases. The recent creation in WHO of the new post of Chief Scientist is giving impetus to digital developments. See a summary report here.

A Paralympian from GB with a prosthetic limb from The Leprosy Mission’s Anandaban Hospital in Nepal

GB Paralympian Stef Reid lost her right foot in a boating accident at aged 15. Despite her talent and tenacity seeing her fulfil her dream of becoming a professional sportsperson, she has a calling to encourage and mentor those struggling with disability as well as a heart for the marginalised. So much so that she is currently taken time out of training for Tokyo 2020 to spend time with leprosy patients at The Leprosy Mission’s Anandaban Hospital and experienced first-hand the work of the artificial limb centre.

In order that Stef, a Paralympic long jumper and sprinter, might literally ‘walk in their shoes’ she has had her state-of-the-art prosthetic foot replaced with one made in the hospital’s workshop which makes prosthetic limbs for those who have lost limbs as a result of leprosy.

Stef, who lives and trains in Loughborough with her wheelchair racing husband Brent Lakatos, said the major difference in her ‘new’ foot was the more economic components and materials used.

“A lot of the way they did the casting was really similar to what I experience in the UK, and this is bearing in mind I go to a very amazing private clinic,” she said.

“You can always tell someone knows what they’re doing by the way they interact with your stump, your residual limb. You can see the guys at Anandaban Hospital have done the casting many times before.

“But in many ways it was also really hard this morning and actually after seeing the things they make, I think I almost felt a little bit embarrassed about the leg that I have, in that my leg is so advanced and it does have the best technology.

“It’s amazing to see how great their casting is, they are doing everything right. It’s just that hurdle of prosthetic legs just cost so much and that’s hard to know.”

Stef said her visit had been more rewarding than she could’ve ever imagined, meeting patients like Jyoti, whose home was destroyed in the 2015 earthquakes, which killed 9,000 people in Nepal, and who was diagnosed with leprosy while pregnant with her second child, Mala (now seven months).

She said: “Before I travelled to Nepal I think there was that hesitation of ‘I really hope I’ll be able to communicate well and they are going to understand me.’

“But in the end it didn’t even matter. I had people coming up to me just wanting to hold my hand. We just stood there and didn’t really have to say anything at all!

“It was just an understanding that sometimes life is really hard and we all go through hard things. But there’s still hope at the end of it.

“Just from being here it has become so clear to me that it doesn’t matter where in the world you are or what culture you are from, we all want the same things.

“We all want to provide a safe home for our family and want to be healthy and part of a community.

“But leprosy is a really hard disease on so many fronts and not just because of the health problems it causes.

“But we have seen that sometimes the things that can be most difficult is the loss of community and stigma associated with leprosy.

“There is unfortunately a lot of stigma associated with the disease and one of the most upsetting things is that sometimes people view it as ‘you’ve got this disease because you have done something wrong, you have done something sinful’.

“I can’t even imagine having to deal with that reaction from neighbours; that somehow this is your fault and ‘you deserve this’ which is so untrue.

“I have been so impressed by the response of The Leprosy Mission. It is not a case of ‘we’re going to give you some medication, we are going to offer you some support and some surgery if you need it and then send you on your way’ because that’s not the way to heal people. There’s is a full-on holistic approach.

“They understand that it doesn’t matter if you fix the body, if you don’t change the views of the community; if you don’t ensure that people are independent financially that they are able to take care of each other then it’s just not going to work. This is what long-term care looks like.”

Anandaban Hospital in Nepal was designated a Disaster Response Centre by the Government of Nepal in the wake of the 2015 earthquakes, after it reached out to 18,000 earthquake victims, as well as leading the world’s fight against leprosy. In addition to being the national specialist leprosy referral hospital for Nepal, it is an International Leprosy Training Centre training doctors and surgeons globally and a world-class research centre partnering with the best researchers in its field, including those at the London School of Hygiene and Tropical Medicine.

Reposted with permission from The Leprosy Mission England and Wales – originally published on 1 March 2019 here.

GPZL Zero Leprosy Country Model

In a webinar on 29 May 2019 the Global Partnership for Zero Leprosy (GPZL) has outlined its Zero Leprosy Country Model. This consists of four elements:

1. Zero leprosy toolkit of best practices, which is currently under development through the work of a large number of subject specialist teams including many participants connected to ILEP Members.
2. Zero leprosy helpdesk, which will be developed later in 2019 and will provide practical advice related to the toolkit and implementation of zero leprosy strategies.
3. Country review, through National Partnerships for Zero Leprosy. The first of these, a pilot review on Nepal, will be happening in July at the invitation of the Ministry of Health & Population.
4. Country roadmap to zero leprosy, which would be prepared after the country review using relevant practices from the toolkit and advice, as needed, from the helpdesk.

See here to view the webinar or the slides.

Nominations for the 2019 REACH Awards

The Recognizing Excellence Around Champions of Health (REACH) Awards acknowledge those who have demonstrated extraordinary leadership and commitment in the field of disease elimination.

From boots-on-the-ground innovators to local community health workers, the REACH Awards aim to celebrate critical contributions from those on the front lines of disease elimination. The awards underscore the belief that no one should suffer from preventable diseases and that the ability of people to live a healthy life is a key driver of development, which leads to stable, prosperous societies.

These awards will be presented by His Highness Sheikh Mohamed bin Zayed, Crown Prince of Abu Dhabi, on November 19 at the Reaching the Last Mile Forum in Abu Dhabi, which will convene government officials, bilateral and multilateral aid leaders, global health experts, and industry leaders to share insights and best practice on how to eliminate or eradicate NTDs, Malaria and Polio.The call for nominations for the 2019 REACH Awards was launched at the World Health Assembly in Geneva. The deadline for nominations is 12 July 2019 and more information can be found here.

UN Special Rapporteur on leprosy visits Brazil

Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, made her first official visit since the creation of her mandate, to Brazil from 7 to 14 May 2019.

As Brazil has the second highest rate of new cases worldwide, Cruz said she wanted to see what measures the authorities were taking to protect and promote human rights of those affected by leprosy. While in Brazil she visited with the federal and local Governments, civil society organisations, leprosy experts, people affected by leprosy, their families and their representative organisations.

After her trip, Cruz expressed concerns about the number of children affected by leprosy in country and brought attention to the fact that many are denied access to schooling. She urged the federal Government to take steps to ensure that those affected by leprosy are protected from discrimination and stigma based on ignorance about the transmission and treatment of the disease.

“…Persons affected by leprosy continue to experience prejudice, structural and interpersonal discrimination and have limited access to fundamental rights and substantive equality. They still struggle to receive appropriate and comprehensive health care, obtain education and employment, and some are still searching for their children who were forcibly taken in the past,” she said.

“More must be done to ensure early detection, prompt treatment, rehabilitation and reconstructive surgery,” the UN expert said. “An adequate standard of living must be ensured by poverty reduction policies, as well as accessibility and reasonable accommodation at schools and work settings. Many people who are affected have asked the authorities to take decisive steps to protect their rights, including affirmative policies to tackle inequality and reparation measures for physical and psychosocial impairments and disabilities caused as a result of past policies,” she added.

Her final report will be presented to the UN Human Rights Council in June 2020.

See the video about the trip here and see the End of Mission Statement in English here and in Portuguese here.

A Summary of the WHO Leprosy Targets Survey

With 198 respondents, the first survey on indicators around leprosy will be used to develop the WHO’s post-2020 global leprosy strategy, expected to be released in the next year.

In February and March 2019, the Global Partnership for Zero Leprosy (GPZL) distributed a 2030 leprosy targets survey. The results of the survey are available on the GPZL website. In addition to the quantitative results collected by the survey, the GPZL received hundreds of thematic comments. Though these comments were not included in the previous version circulated they are available in the current version. Respondents supported the targets overall; but, emphasised that many are only attainable with active case finding, well-trained healthcare staff, and complete treatment and follow-up. In addition, some targets, while desirable, are not highly measurable. Many respondents offered alternative wording or target suggestions.

The survey was designed with input from ILEP’s Technical Commission and gathered feedback on potential global targets grouped under zero transmission, zero disability and zero discrimination. Its purpose was to help provide input into the World Health Organization’s post-2020 global leprosy strategy and potential global targets for 2030.

Together they are NLR until No Leprosy Remains

Netherlands Leprosy Relief has changed its name and organisational structure, but they continue to push towards a reality where No Leprosy Remains.

Netherlands Leprosy Relief has worked towards a world without leprosy over the past 50 years. As their ambition is to continue until No Leprosy Remains, they are now making a significant organisational change. In 2018 NLR started transforming into an alliance of locally embedded NGOs to better serve their mission to promote and support the health, ability, and full inclusion in society of persons affected by leprosy.

“NLR has been focused on innovation for many years and with this organisational change we ensure that we can continue to focus on introducing and implementing inspiring breakthroughs,” said Jan van Berkel in their official statement.

And the new way of working, as an alliance, comes with a new name: Netherlands Leprosy Relief continues as NLR with a different meaning — No Leprosy Remains. The first members of this alliance are NLR India, NLR Indonesia, NLR Mozambique, NLR Nepal, NHR Brasil and Leprastichting (NLR Netherlands). They have a shared track-record as teams who keep going until breakthroughs are implemented. Together they will focus on enabling research and driving evidence-based innovations. NLR envisions a growing alliance of members who share their mission. For more information about the alliance formation and partnership opportunities visit here.

Report from IDDC

The International Disability and Development Consortium (IDDC) General Assembly this month focused on Leaving No One Behind: ensuring persons with disabilities and other marginalised groups are included in development cooperation.

ILEP and some of its Member associations are also members of the International Disability and Development Consortium (IDDC). Its General Assembly included a workshop, organised by CBM, on Leaving No One Behind: ensuring persons with disabilities and other marginalised groups are included in development cooperation.

Leave No One Behind is a fundamental principle of the 2030 Agenda for Sustainable Development and the SDGs. Although the principle is referred to often, there is a lack of binding strategies and measures to ensure it happens. IDDC groups worked on the application of Leave No One Behind in global partnerships, access to health, education and employment, and decent work. We will later share final versions of these short documents with Members, as they are a useful aid in advocacy and policy thinking for leprosy, as well as for disability.

A short overall cross-cutting document was agreed to. This document argues that, four years into the SDGs, too little is being done to ensure the Leave No One Behind principle is actually being implemented. It can be seen here. This also includes brief statements on participation by persons affected, accessibility, accountability for Leave No One Behind, disability-inclusive financing, and the collection of disaggregated data.

Leprosy at Novartis Foundation

Since 1 May 2019 the leprosy work at the Novartis Foundation has been reallocated and integrated into the new Global Health & Corporate Responsibility organisation of Novartis.

For over 30 years, Novartis and the Novartis Foundation have been working with partners like the Global Partnership for Zero Leprosy (GPZL) to eliminate leprosy and continue their long-standing commitment to exploring innovative ways to interrupt the transmission of the disease.

The reorganisation of the work on leprosy has unified the multi-drug therapy supply chain (already hosted by Novartis) and the support to the GPZL.

Further work on the diagnostic test for leprosy will be taken on by the Global Drug Development unit for NTDs.

In 2019, the Foundation will finalise the LPEP initiative and its dissemination, as well as the proof of concept of the AI powered digital tool to accelerate leprosy diagnosis, in partnership with Microsoft and Fiocruz.

“We are extremely grateful for the nice collaboration we had together over the past years and very much look forward to hearing more about the great work the Partnership has set out to achieve in the future,” said Ann Aerts, the Head Novartis Foundation, in an email.