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.

Join us on June 27 for Leprosy, dehumanisation and extreme vulnerability at the Palais des Nations

How to fulfil the 2030 Agenda for stigmatised social groups

Geneva, 18 June 2019 – What is known about leprosy as a condition, from a scientific or biomedical perspective, does not address how people affected by the disease are dehumanised – day after day, in countries around the world – through their lived experience.

“…The label of leprosy has been associated with the abuse and violation of countless women, men and children. And that is true whether these people had visible impairments or not. So, the barriers, the exclusion, the dehumanising attitudes of society, are not just about visible impairments or even about a disease…: they are in the label and in this long, long history of discrimination at all levels.” Geoff Warne, Chief Executive Officer, International Federation of Anti-Leprosy Associations (ILEP).

Each year more than 210,000 women, men and children are diagnosed with leprosy. Up to 50% of people affected by leprosy will experience depression or anxiety due to ongoing stigmatisation on the grounds of their disease. Discrimination and dehumanisation also increase the risk of suicide among people living with leprosy.

Stigma still frames many discriminatory laws in place, in many different jurisdictions, against persons affected by leprosy. ILEP research has revealed that 145 laws discriminating against people affected by leprosy exist in 29 countries. Other ways that stigma is being perpetuated is through social exclusion, a lack of community participation of persons affected, and no or little access to services (economic and social) and rehabilitation.

“I would say that we’re witnessing another turning point in the modern history of leprosy now, with the growing consensus that a human rights agenda is critical for tackling leprosy and leprosy-related discrimination,” said Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. “However, we have a lot of hard work ahead to raise awareness about leprosy as a human rights issue in the global human rights community and the leprosy community itself. Both still see leprosy as a health issue and that is why we need to foster participation and give voice to persons affected as the first step towards a human rights approach.”

To really understand how stigma is dehumanising to people affected by leprosy, the Permanent Missions of Japan, Brazil, Ecuador, the Republic of Fiji, India and Portugal, ILEP, and the Sasakawa Health Foundation invite you on June 27, 2019, to the Palais des Nations at a side even to the 41^stHuman Rights Council to learn about the lived experience of stigma, discrimination and dehumanisation of persons affected by leprosy and their families. It will explore practical ways to ensure that no one is left behind in efforts to achieve the Sustainable Development Goals.

“Since I have experienced the pain and effects of being affected by leprosy, like difficulties in getting correct treatment, facing stigma, it is easier to understand the thinking and emotional disturbances of these people,” said Rachna Kumari, a Community Mobiliser in a LEPRA Society’s leprosy referral centre in Munger, Bihar State, India, and a member of the ILEP Panel of Men and Women Affected by Leprosy.

Bringing attention to the experiences of people affected by leprosy, and showing how their participation – working with civil society, NGOs, specialised agencies, regional human rights mechanisms, national human rights institutions and the overall United Nations system – is moving the world forward, will be the only way to achieve zero discrimination and will help to bring us one step closer to a world with zero leprosy.

About Alice Cruz

Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. The Human Rights Council appointed her to lead the mandate on 1 November 2017. Before that Alice worked as External Professor at the Law School of University Andina Simón Bolívar, Ecuador. She has worked with the Brazilian non-profit organisation Movement for the Reintegration of Persons Affected by Hansen disease (MORHAN) and has served as a member of the International Leprosy Association’s Council (2014-2016). Alice has researched and written on the subject of eliminating leprosy and the stigma attached to it since the beginning of her career.

About ILEP

ILEP is a membership organisation of 13 international NGOs whose outreach spans 69 countries and 710 project locations worldwide. ILEP is supported by two advisory boards; a Panel of Women and Men Affected by Leprosy and the ILEP Technical Commission. In the fight against leprosy, ILEP and its Members work alongside the World Health Organization, Novartis, The Nippon Foundation, other NGOs, governments, Ministries of Health and more than 500,000 supporters worldwide.

About Sasakawa Health Foundation

SHF looks at leprosy as a complex of medical and social/human aspects. SHF believes that a world without leprosy, free from stigma and discrimination, cannot be achieved unless the individuals cured of leprosy enjoy equal and full opportunities as constructive members of the community. SHF supports projects to make them economically and socially independent and empowers them through better education and networking. Since 2003, a representative of people affected by Hansen’s disease has been a member of the SHF Council.

ILEP Annual Report 2018

ILEP’s Annual Report covers our activities in 2018. We are proud to share this report with you as we continue to work collaboratively towards #zerotransmission, #zerodisabilities and #zerodiscrimination. Read the full report here.