The Leprosy News #5
What NGOs should learn following the Global Forum, a review of ILC, and how Nigerians with disability will be able to vote for the first time.
The Leprosy News #5
Quarter 1, 2023
The Global Forum was a reflection of what NGOs should have done better
By Mathias Duck and Tim Burton
The Global Forum was a reflection of what NGOs should have done better
by Mathias Duck (Global Advocacy Lead) and Tim Burton (Global Communications Lead), TLM International
For some years, the leprosy sector has been on a one-way journey towards a more significant and serious collaboration with organisations of persons affected by leprosy.
Within the wider NTD sector, it could be argued that leprosy is leading the way in this regard. And, whilst we should be proud of that fact, we shouldn’t consider that our work here is done; it is only getting started.
In November last year, we had the privilege of sitting in on the Second Global Forum of Organisations of Persons Affected by Leprosy, which was organised by the Sasakawa Health Foundation and took place in Hyderabad ahead of the International Leprosy Congress.
At that Forum, we heard from people who are excited about the future of their organisations and are frustrated that they extended a hand at the first Global Forum in Manila in 2019 that has not been sufficiently reciprocated by other leprosy organisations in the intervening years.
The below is a reflection from two people working at one of those leprosy organisation on what we heard in Hyderabad and what we think the response should be.
A small note: What we write is for a variety of audiences (other NGOs, persons affected by leprosy, governments, members of the wider NTD and disability sectors), but for the purposes of this article, when we refer to ‘we’, we mean leprosy NGOs and ‘them’ refers to the organisations of persons affected leprosy that were represented in Hyderabad. Although please keep in mind that there were a number who were not able to attend and whose voices still add value to the discussion.
A seat at the table
There’s a well-known phrase in the disability sector: ‘nothing about us without us’, which has rightly been shortened to simply ‘nothing without us’. This is the very first thing we took away from Hyderabad.
This principle comes without caveat or qualifier; it needs no justification. In the room in Hyderabad were professionals who have started something from nothing, who have seen a need in their communities and worked to meet it. If we didn’t need their help, we would have seen and met those needs already.
This principle needs no justification, but if you asked for one, there it is. We sat in a room full of people that looked at the wider leprosy sector and said ‘you will never see everything you need to see or know everything you need to know to reach zero leprosy if we do not have a seat at the table’.
What does a seat at the table mean? What does it not mean?
It means the active involvement of organisations of persons affected by leprosy in the design of projects, in the development of strategies, in advocacy and communications about leprosy, in research, and in healthcare. It means that we develop our organisational strategies in tandem with organisations of persons affected by leprosy so that when they flourish, we do too.
It does not mean asking for the views of organisations of persons affected by leprosy so that you can say you have asked. It does not mean asking the same questions again and again. It does not mean only asking people you know will give you a safe answer or an answer in a language or cultural context that you can grasp easily.
In Hyderabad, we were sat in a room of people who had business cases for investing in their organisation, who had USP documents, and a wealth of connections and relationships that we struggle to have but certainly need. It was a room full of people who asked for a seat at the table in 2019 and had to ask again in 2022.
That’s not to say that leprosy NGOs did nothing to respond to what was said at 2019 – there has certainly been better representation since then - but the message from Hyderabad is that we didn’t do enough and we should do more. Given the current direction of travel, we’re hopeful that more will be done.
Learning to build partnerships that are mutually beneficial
Organisations of persons affected by leprosy and leprosy NGOs want mutually beneficial partnerships, that much is not in doubt. We have a shared goal of zero leprosy and a shared compassion for anyone whose life has been damaged by the disease. What we took away from Hyderabad is that we need to be smarter about how we build mutually beneficial partnerships.
There may be a bit of a hangover from the charity model of development work that stops us seeing organisations of persons affected by leprosy as partners in the same way we would see another NGO. We need to start asking, what do you have that we want and what do we have that you want?
"We need to start asking, what do you have that we want and what do we have that you want?"
In Hyderabad, we heard that organisations of persons affected by leprosy can offer insights that we couldn’t possibly have, they offer access to communities that would not be so ready to trust us, they offer networks that can be mobilised and a voice with more legitimacy than we have.
They are also conscious of some of their own shortcomings. As NGOs, we have structures, history, and governance that allow us to access funding. We have digital skills that allow us to reach people online. We have knowledge in areas like research, programmes, finance and advocacy. We have international networks and regular conferences. And yes, we have money and resources.
Building mutually beneficial partnerships means looking at those two lists and considering how we best exchange talents and resources. The below are a few very quick ideas.
One of the key recommendations that came out of the Forum was that the digital divide be bridged. That could be as simple as TLM’s work with MAPAL in Myanmar, where we are providing basic IT skills. It could also mean that our digital communications and fundraising experts share their knowledge with representatives from organisations of persons affected by leprosy through training or mentoring.
If organisations of persons affected by leprosy do not meet the criteria to make funding applications on their own, then why not make them in consortium with NGOs? Equally, LRI has recently announced a funding call to boost the experience of junior researchers; something similar could be considered to boost the capacity of new organisations of persons affected by leprosy so that they one day meet the standards of more high-level funding calls.
We have experience of working in networks and through umbrella bodies like ILEP, NNN and IDDC, so perhaps we can share what we have learnt about effective ways of working through these structures.
When we work to build the capacity of our own staff in areas like finance or programmes, why not include organisations of persons affected by leprosy?
These are some of the things that The Leprosy Mission is considering for the coming years and our next Global Strategy, which will be launched at the end of 2024. No doubt other leprosy NGOs are having similar thoughts.
The Third Global Forum
Listening to discussions in Hyderabad was humbling and we have written the above because, although there were some significant steps in the right direction, we believe The Leprosy Mission could have done more and we certainly aim to do more in the years to come.
If there is to be a third Global Forum ahead of the International Leprosy Congress in Bali in 2025, we hope the recommendations will not be a copy and paste of 2019 and 2022. We hope that the recommendations will reflect organisations that are taken more seriously as partners and that have the strength and confidence that comes with that.
If that proves to be the case, we will hopefully find that leprosy NGOs feel stronger and better equipped, as well.
The article is a reflection on the Global Forum from an NGO perspective, but we want this to be a start of a conversation.
On Tuesday 21 February at 11am GMT we will be hosting a webinar with leaders from leprosy peoples' organisations so that we can hear more from them about how they would like to partner with NGOs in the years to come.
Sign up to the webinar here >
How Nigerians with disability won the right to vote this February
Interview with Jika Amah-Baruwa
How Nigerians with disability won the right to vote this February
February 2023 marks a critical moment in Nigeria’s politics as the country heads to the polls to decide on the right candidates for the offices of the President, Vice President, Members of federal and state legislatures, as well as State Governors and their deputies.
Although many of the candidates standing for office at this election will be familiar faces, the electorate itself is looking fresher. As well as a large wave of young people who are old enough to vote for the first time, persons with disability will now have an equal chance to take part in the process and have their voices heard.
The Leprosy Mission Nigeria have been at the heart of a campaign to ensure greater participation for persons with disability and those affected by leprosy at this election. We spoke to Jika Amah-Baruwa from TLM Nigeria to find out more.
Why were persons with disability and persons affected by leprosy unable to participate in previous elections?
Jika: There were more than a few reasons why persons with disability were unable to participate in past elections. Firstly, the electoral system did not take into consideration the particular needs of persons with disability and those affected by leprosy. As such, these Nigerians faced serious practical problems, which were exacerbated by stigma. There was no provision for them within our electoral system.
One of the biggest hurdles to participation was the process of voting itself. Nigerians can only vote if they have a Permanent Voters Card and at previous elections, you could only access this Card by giving your thumbprint. For persons affected by leprosy with reabsorption of the fingers or any person with a disability that meant they did not have a thumbprint, this meant they lost their right to vote.
There were other hurdles that stood between persons with disability and their right to vote. Election materials were not made available in braille, so persons with sight loss often struggled to register, get accredited, or cast a vote at a polling station. Similar challenges awaited persons with hearing loss, as there was often no way to communicate with election officials.
Sadly, there were further obstructions for the many communities of persons affected by leprosy who live in remote places. This can be a challenge on any day, but on election day the public transport service is closed as most people are considered to live within walking distance of the polling station. At previous elections, communities of persons affected by leprosy had no polling station in their proximity and were excluded from voting as a result.
Even if a person affected by leprosy did manage to get a Voters Card and eventually managed to get to a polling station, they might still face challenges. We spoke to a gentleman who got himself to the polling station and joined the queue, only for everyone else in the queue to move and form a separate queue because they did not want to be near a person affected by leprosy as they feared his condition was contagious.
Between all of these challenges, we could not come close to saying that persons with disability and persons affected by leprosy accessed their right to vote in past elections.
“We could not come close to saying that persons with disability and persons affected by leprosy accessed their right to vote in past elections.”
What changes have been put in place for this election?
Jika: Over the last few years, we have worked alongside organisations of persons with disability to engage extensively with the Independent National Electoral Commission (INEC) with the goal of achieving systemic change. That process has secured some key victories to ensure the participation of persons with disability and persons affected by leprosy at the 2023 election.
Following our efforts, the Commission has launched a data dashboard that captures all registered voters with disability in all polling units across the country, with aggregation by disability type.
A Bimodal Voter Accreditation System has been implemented. This means there are two biometrics for identifying voter identities: facial recognition and fingerprints.
A braille ballot guide is available to persons with sight loss. INEC has developed posters using visual art to enable persons with hearing impairments to understand the voting procedure. Persons with disability will be allowed to be accompanied into the polling unit.
For the first time in our nation’s electoral history, polling stations will have sign language interpreters. Assistive devices will be made available at the polling stations, including magnifying glasses and chairs that are set aside for people who might struggle to stand for long periods. Another first is that polling stations will be present in communities of persons affected by leprosy.
There have been a lot of changes to bring our electoral system in line with the principles set out by the UN’s Convention on the Rights of Persons with Disability, but it is summed up simply by one person who came to us and said with excitement, ‘I now have my permanent voters’ card!’ For many affected by leprosy and disability, having a voters’ card for the first time is a uniquely powerful moment.
How did you make those changes possible?
Jika: We’re only a few weeks away from Nigeria’s first truly disability-inclusive election, but it has been a long road to get to this point.
At the start of this journey, two years ago, we began a process of self-advocacy training with disabled peoples’ organisations (DPOs). That was an important place for us to start because disability in Nigeria is conflated with charity, handouts, and begging. We did not want this issue to be addressed in this way. This is a human rights issue and persons with disability needed to lead from the front by having their voices heard.
As the DPOs grew in experience and confidence in their self-advocacy skills, we began to set up meetings with the electoral commission (INEC).
Sadly, it was not as simple as having one meeting and reaching an agreement to have inclusive elections. It required consistent follow-ups and the engagement of strategic partnerships.
TLM Nigeria's workshop with INEC Officials
Because our ask was a rights-based issue, we engaged the National Human Rights Commission as a key stakeholder. With their backing, our message to the electoral officials was much stronger. The same was true when we engaged the media and began to educate them in some of the areas of discrimination and stigma that they were perpetuating with their coverage of disability and leprosy issues.
There is a lot of stigma and taboo surrounding leprosy and disability in Nigeria and people do not want to talk about it. A mother could take her child with disability to the hospital for treatment and a healthcare worker will ask her why she bothers caring for the child. That attitude is common across the country and it was the attitude we faced with our initial interactions with INEC officials.
With the collective push from partners and DPOs, the INEC officials were faced with pressure from several angles. The National Human Rights Commission brought their weight, the press began to report on the issues, and then the Federal Ministry of Health came on board to offer crucial legitimacy. The Ministry of Health helped us to show INEC officials that conditions such as leprosy and other neglected tropical diseases can be treated, and medication is free and available for all.
Progress was slow, but it escalated quickly when the leading DPOs organised a march which ended at the INEC Headquarters. When the INEC leaders saw persons with disability marching on their building, they quickly moved to deescalate the situation and we start to make faster progress.
Since the march, TLM Nigeria has hosted meetings and workshops with INEC officials while also facilitating visits to communities of persons affected by leprosy. Perhaps the most significant step is that INEC has established a disability and inclusivity department and assigned desk officers in each of the 36 states. These desk officers will have the duty of ensuring that the electoral concerns of persons with leprosy and other forms of disabilities are addressed.
What advice do you have for others who want to bring about similar change?
Jika: The most powerful element of this process was the engagement of DPOs. Their voices set the tone for change.
One of the moments that has stood out to me is when a lady said to election officials, “My disability doesn’t seem to matter when you come to take my taxes, so why does it suddenly matter when I want to cast my vote?” You can’t put a price on the power of voices like this.
We combined the power of this voice with the strength of the National Human Rights Commission, the Federal Ministry of Health and the press. Bringing about systemic change is never easy, but it is possible when you approach it through multiple key and powerful stakeholders.
Do you think there are unfair hurdles for persons with disability who want to vote in your country?
What did we learn from ILC in 2022?
Reflections from those who attended
The 21st International Leprosy Congress took place in Hyderabad, India in November 2022.
We have asked some of those who attended to share their reflections on what they took away from the Congress.
What inspires me at the ILC is the interchange between people that share a collective drive to reach zero leprosy, and to make a positive difference in the lives of persons affected by leprosy today. Leprosy is a challenging disease, and for that reason I think that all of us need to have our own commitment ‘recharged’ from time to time. Meeting together with like-minded people is a great way of doing that, whether in the learning environment or in the socialising, meal-times and other gaps in the programme. Thanks to the International Leprosy Association for bringing is this event!
Geoff Warne, CEO of ILEP
According to Manly Hall, words are potent weapons for all causes, good or bad. The phrase ‘leprosy elimination’ continues to be controversial and confusing. Previously defined as achieving Less than one leprosy case per 10,000 population. It was assumed that leprosy would no longer be a public health problem once achieved. Evidence has since shown otherwise.
Given this, the phrase has been redefined as Interruption of leprosy transmission, by WHO. A key take home from the 2022 ILC is the critical need for practitioners to discontinue the use of the phrase ‘leprosy elimination’ because it is misleading.
Dr Sunday Udo, National Director of TLM Nigeria
Despite the fact that leprosy is a neglected tropical disease, the ILC shows that leprosy has a voice on a global scale. It is quite reassuring to note that, from a medical standpoint, several nations and organizations are attempting to eradicate leprosy by implementing SDR-PEP and putting great effort towards discovering a vaccine for the disease.
Jiptha Boiragee, TLM Bangladesh
ILC gave us a very important message that scientists and researchers are consistently working in the discovery of more effective measures to defeat leprosy. We are hopeful there will be a vaccine soon in the future, and we will ensure that all the stigma and discrimination come to an end with the end of the disease.
Such forums give the people with lived experience opportunities to share their experiences that help us foster leaders in the field of leprosy.
Amar Timalsina, IDEA International
Since new drugs for leprosy arise infrequently, exciting new treatment possibilities were highlights of the 21st ILC. The first human trial of the bactericidal agent Bedaquiline showed great promise, with killing of M. leprae confirmed by molecular viability testing. New information was presented regarding the anti-inflammatory mechanisms of CC-11050 for ENL. Further clinical trials of these drugs are expected soon.
Diana Lockwood presented a strong case for the need to conduct robust clinical trials to develop a new MDT regimen — more potent, shorter, and with fewer side effects. Nearly 75 years after the first cure with sulfones was announced at the 5th ILC in Havana, treatment has come a long way.
Dr David Scollard, Director (retired) US National Hansen’s Disease Program
Hosting ILC in India ( the country with the highest global burden of leprosy), offered the most exciting possibility of many people affected by leprosy participating in the conference.
The congress also offered participants an opportunity to engage with communities who are most affected and opened their minds to some of the realities that they face. For us at TLMTI, we had the opportunity to host a first ever workshop for champions during ILC as a side event in the same venue.
Two of the sessions that stood our to me were Alice Cruz's reflection on the remaining challenges regarding stigma and discrimination and the Novartis Symposium, which reflected on the potential of using AI for rapid screening and diagnosis of leprosy.
Nikita Sarah, TLM India
This kind of event gives us new ideas and motivation to work in the field of leprosy. From a mental health perspective, there were many papers presented at ILC. It was really exciting. In the previous ILCs, there weren’t many papers related to mental health and leprosy. The participants are also more concerned and interested in the field of leprosy related to mental health research. Leprosy related mental health should be the main priority in future.
Ruth Shrestha, TLM Nepal
As a country leader supporting projects of our TLM partners in the field I was interested to update myself on general developments in leprosy research and on more specific research projects to support.
Our priority area is stopping leprosy transmission. Most presentations were too short, but the informal side meetings were very worthwhile.
My takeaway from ILC 2022 were:
- Strong collective effort towards Zero leprosy and substantial growth in leprosy research investments
- Interesting development in new antibiotics for leprosy treatment and treatment of leprosy reactions
- Potential contributors to leprosy transmission, like Helminth infections.
Henno Couprie, Country Leader of TLM Netherlands
It was an honour to attend my second ILC alongside key actors across so many fields within leprosy. I’ve come away with three takeaways. First, early detection remains our biggest and most pressing challenge. Second, we need to be implementing workable systems for following up cases to prevent disabilities. Finally, we have to make use of leprosy champions in our case detection efforts.
Beletshachew Tadesse, Country Leader TLM Ethiopia
One of GPZL's most significant contributions to ILC was our research funding plenary, co-hosted with LRI, which shared data about leprosy organizations' funding contributions to leprosy research in the last five years. GPZL strives to bring together leprosy entities to collaborate and work together more effectively, and that's what we sought to achieve with the plenary, by increasing transparency around leprosy research funding.
Andie Tucker, Global Partnership for Zero Leprosy
One of the stand out presentations for us looked at a change to the leprosy treatment regimen. Clofazimine and Dapsone have side effects that discourage patients from completing their full treatment. We hope that Rifampicin, Ofloxacin and Minocycline could prove a viable alternative in time so that patients don't face such severe side effects and we can mitigate against the risk of drug resistance.
Sian, Bahadir, Natalie from TLM England & Wales
Two things stood out to me. The first was the discussion around the term ‘leprosy affected’, which might be adding to the stigma around leprosy. Perhaps we should not be using the term because it could be having an impact on the mental health of former patients long after they've finished treatment for their physical ailments.
The second thing that stood out was the presentation on the Temporalis Muscle Transfer for Paralytic Lagophthalmos Reconstruction. The procedure carried out for Lagophthalmus is an elective one, but it has been seen to have an effect on the person's morale and self-stigma as it is a very visible deformity. The work by Anandaban Hospital is a real stand out in this area.
Dr Jemish Acharya, TLM Nepal
Overall, ILC was very encouraging. Dr Diana Lockwood presented on the need for a new treatment regimen for leprosy, given the many people who experience side effects. This highlighted this particular need for me and it was good to hear of several new drugs, notably bedaquiline (Janssen, Belgium), showing great promise in pilot studies.
There were a few other details, like the substantial number of studies on the mental wellbeing of persons affected, most of which showed very similar results: a large proportion (up to 50%) of those affected also show signs of depression and anxiety. Fortunately, there are promising interventions, such as peer support. This has been shown to be effective using the Basic Psychological Support for persons affected by NTDs (BPS-N) approach in India and the mental motivators approach in Bangladesh.
The Institute for Tropical Medicine in Antwerp presented several interesting results from the PEOPLE trial in the Comoros, including a significantly increased risk of leprosy among contacts living up to 75 metres around an index case, but not beyond. They also showed how hi-tech genetic approaches can detect drug resistance, but also the distribution of different types of M. leprae in an area and even estimate the burden of infection in a community.
Dr Wim van Brakel, NLR International
The ILC-2022 was a much-needed and very well-organised event in hybrid mode at Hyderabad, India. The added value of in-person participation was also palpable where various stakeholders (researchers, clinicians, policy-makers, funders, industry participants, patients and other contributing players) of leprosy control efforts were able to effectively interact with each other.
This gathering successfully facilitated improved understanding of the current priorities, the progress made so far, the remaining challenges, and the possible ways forward to attain the target of "Zero-leprosy" one day. Continued commitment and focus are required to finish the ‘Unfinished Business' and the so-called ‘last mile’ of leprosy control.
Professor Pushpendra Singh, National Institute of Research in Tribal Health, Jabalpur, India
As a clinical researcher in leprosy, I really appreciated joining colleagues from all over the world at ILC 2022 in Hyderabad. Learning about new advances in the field and the problems people encounter is always a trigger for new research ideas: a better treatment regimen for leprosy, better case finding and stigma reduction interventions, new surgical techniques in managing disabilities. Research funding availability talks were useful and the use of artificial intelligence (AI) in facilitating training, case detection, case management was inspiring.
Dr Saba Lambert, ALERT Ethiopia and LSHTM UK
Leprosy in the News
The 'Good, the Bad, and the Ugly'
Leprosy: Ancient disease able to regenerate organs
Leprosy bacteria may hold the secret to safely repairing and regenerating the body, researchers at the University of Edinburgh say.
Animal experiments have uncovered the bacteria's remarkable ability to almost double the size of livers by stimulating healthy growth.
Human rights violations confirmed at leprosy sanatorium
National Sanatorium Oku-Komyoen for leprosy patients in Okayama Prefecture committed serious human rights violations by performing autopsies on many residents without consent, a team investigating the matter said.
Why is an outdated leprosy law in Jamaica being dropped?
A stigmatising law that was enacted in Jamaica 73 years ago when there was no cure for leprosy is to be repealed.
Current health and wellness minister Dr Christopher Tufton has submitted a one-page bill to revoke the statute that has become irrelevant.
Persons affected by leprosy excluded from conversations around disability: rights expert
People affected by leprosy should be fully recognized as persons with disabilities, both at the national and global levels, a UN independent human rights expert said on Friday.
Pandemic hid rise in cases of leprosy in India
ighty-eight people, including 12 children, have been diagnosed with leprosy this month [November] in one city in India, during a drive to diagnose cases missed during the pandemic.
The Bombay Leprosy Project said that it was the highest number of new cases detected for 15 years.
Younger Generation Needed in Efforts to Change the Leprosy Perceptions, Says Miss World Brazil
Miss World Brazil Letícia Frota and Pragnya Ayyagari, Miss Supranational India held a special session to raise visibility about persons affected by leprosy within the context of the Don’t Forget Leprosy Campaign.
Ghettoization of people with leprosy still prevalent: WHO goodwill ambassador Yohei Sasakawa
On Monday, WHO goodwill ambassador for leprosy elimination, Yohei Sasakawa, interacted with the press here to share his thoughts on the way forward to eradicate leprosy.
The Leprosy Mission Laments Violation Of Disabilities Rights, Poor Health Access
The Leprosy Mission Nigeria (TLMN), has lamented the violation of disabilities rights, poor health access and abuse from the family and caregivers of persons with disabilities in Nigeria.