123: Are stigma and social ostricization the biggest barriers to eradicating Hansen's disease: In conversation with Daisy Mansfield, Leprosy Mission

The Elephant in the Room

Shownotes:

Not many people in the western world have heard of Hansen’s disease or Leprosy – for most who are familiar with it arouses fear and aversion. It is a tropical disease that occurs in more than 120 countries, has been referenced in the bible and Victoria Hislop wrote The Island inspired by a visit to Spinalonga, the abandoned Greek leprosy colony, which sold over a million copies.

My earliest interaction with the disease was on the Main Street of the city I grew up in. Along the street, one aften came across a small group of people begging for alms, those badly affected being pulled on makeshift carts by the more able bodied. The easiest thing to do was to ignore them or pretend one could not see them or their plight. That was my first experience of shame. Shame at the lack of knowledge, confidence or ability to engage with respect with people disfigured and ostracised by disease. However, this is not about me but about people who are disenfranchised, excluded from accessing healthcare, education, economic opportunities and social support because of fear and misinformation.

A couples of months back, I happened to be seated on the same take table at India Week as Sian Arulanantham, head of programmes and research of Leprosy Mission UK. We got chatting about the incredible work they are doing across the world and in India and I invited them to be a guest on my podcast to speak about the important work being done to eradicate an ancient disease that stigmatises and makes outcasts of over two hundred thousand people every year.

In this episode of The Elephant in the Room podcast, Daisy Mansfield Policy and Advocacy Adviser at Leprosy Mission talks about the work being done in India and across the world. We spoke about a) how they deliver on their goals in this highly complex geography b) behaviour change campaigns for education and removing social stigma c) Strategies to empower individuals and families d) Roles models with lived experience of disability and stigma e) WHO 2035 goal for eradication of the disease and challenges to getting to the target

The most important thing to remember is that if detected early, the disease is curable with multi drug therapy (MDT) and the good news is that the WHO has made MDT available free to all leprosy patients around the world (with the help of big pharma).

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Episode Transcript:

Sudha: Good morning, Daisy. Lovely to have you here today. I'm so glad that I met with Sian and Louise at India Week recently in London. And that's how I came to know about the work of Leprosy Mission UK. So, let's start with a quick introduction. Tell us a bit about yourself.

Daisy: Hello. Yes. It's so nice to be with you on the podcast today. Thank you very much for having me. I'm Daisy and I work for the Leprosy Mission and have done for about three years now in a number of different roles. So, my current role is called a Programs and Advocacy Officer. Which means I am a point person, look after some of the projects that we fund in India and work in partnership with our team over in India. And previously I had roles in fundraising and also advocacy and policy working with UK stakeholders in parliament and also in international spaces such as the UN and WHO to advocate for people affected by leprosy.

Sudha: That's very interesting. So, we are here today to talk about leprosy or Hansen's disease. How prevalent is it globally? What is it and what are the symptoms? There seems to be a lot of ignorance, especially I'd say in Western countries. And it doesn't exist in lot of Western countries. So tell us a bit about it.

Daisy: Yeah, certainly. Actually, when I first joined the Leprosy Mission, I thought, Oh, I know what leprosy is. And I quickly realised that there was a lot of misunderstandings or misconceptions about the disease that I had thought were true.

And leprosy is one of the oldest diseases known. We see it back in biblical times, but there's so much of the disease that is so misunderstood in today's world and as you said, part of that is because it no longer exists here in the UK. It did many years ago and affected many thousands of people.

But today we see it across the world, particularly in places where poverty exists and slightly poorer communities, rural communities. So, you might be surprised to know there's 200, 000 new cases every year. And so. if you do the rough maths on that's about one person every two minutes.

And that's new cases of leprosy, but also there's thousands of people or millions of people that are living with the causes of leprosy which could be disability. It could also be the stigma that is surrounded by a leprosy diagnosis, which I'll talk a little bit more in detail about later. So, leprosy is a bacterial disease that is spread through prolonged and close contact and many of us think that leprosy is actually caught by touch, but that is a myth. It is not caught by touch it's transmitted through water droplets in the air, so between coughing and sneezing. But you need to have that prolonged contact with someone to catch leprosy.

Some people may remember many years ago. Princess Diana was heavily involved in work with people affected by leprosy. And she was over in India and there was a very iconic picture that hit the news of her with her hand, her arm around somebody affected by leprosy and everybody had told her, You can't touch them, don't touch them, you're going to get leprosy, and actually she'd been told by medical experts in these hospitals that it was okay, it wasn't caught by touch. And so, there's another example of a miscommunication that many of us have.

And let me just talk a little bit about the symptoms of leprosy as you've asked. So, leprosy affects the nerves and particularly in people's hands and their feet and they lose feeling in their hands and their feet. And you can perhaps imagine that you're cooking, and you've got a saucepan on the hob or something, and yes, it might be hot, but until you touch it, do you know how hot it is and actually. If you put yourself in a slightly more rural position where you perhaps you're cooking on an open fire, and you have a pan there if you have no feeling in your hand, there is nothing to tell you to remove your hand from this hot pan and you can so easily burn your hand and you can get really severe wounds and ulcers. And particularly many people experience ulcers on their feet. And these can get infected and if they're not looked after properly, sometimes there's no other choice other than amputation for people's legs particularly.

And so, we see one story is a young girl called Shakti who was in one of our hospitals in Nepal. She was only 16 years old and because her leprosy hadn't been diagnosed for many years. She'd hidden it away but also medical centres which she'd been to had not necessarily diagnosed it, she hadn't received the treatment particularly early and actually at 16 years old, she had to have an amputation of her leg. And the impact that had of her not being able to go to school and she had dreams that she wanted to become a doctor and the implications then of how her life changes at such a young age. One really key thing is to be able to find and treat people with leprosy as early as possible. The sooner people receive medical help, then the less likely they are to have implications.

Sudha: Daisy, is there a cure for leprosy? I know in India; all children are given the BCG vaccine just a couple of weeks after they're born. But I'm aware that again, in Western countries, it is not so prevalent and it's not something that is given. And also, there is the anti vax movement, which is pretty strong.

Daisy: Yeah, so actually the good news is there's a cure for leprosy and it's relatively straightforward. It's antibiotics as we know. These antibiotics are called multi drug therapy, MDT. And they're taken for between 6 and 12 months, depending on the load of bacteria in somebody's body.

And for patients affected by leprosy, these antibiotics are free. But actually, they only cost 24 pound so, they're not expensive to provide for people affected by leprosy. And the link that you mentioned to the BCG vaccine obviously children get this vaccination when they're first born.

And this actually, offers a small bit of protection against leprosy. The primary job of that vaccine is tuberculosis, but the reason that there's a link is because the bacteria of leprosy and the bacteria of TB are almost like cousins. They share some similarities and so that vaccination doesn't necessarily fully prevent people from getting leprosy, but it does provide an extra level of protection.

And so, there's lots of research across many of the countries around the world research centres are studying how leprosy is transmitted, the actual bacteria and particularly a lot of research into the tools to diagnose leprosy. We want to be able to diagnose leprosy within communities and easily be able to identify, diagnose, and treat people as soon as possible.

We have some world leading research centres within the leprosy mission that are researching these things, and we continue to do this and this is really a key part of what we do to fully understand leprosy. It's a very complex disease and so we need more research and more funding to understand this to be able to provide the right treatment for people.

Sudha: Yeah. We discussed that leprosy is not necessarily prevalent in Western countries. And about two thirds of the incidences are found in India, followed by Brazil and Indonesia. Is there a reason why there are more incidences of the disease in these countries. Is the climate is the weather or is it poverty?

What contributes? I'm sure there's some data and research around that.

Daisy: Yes. Leprosy has historically been endemic in lots of these countries. And leprosy has existed in India for decades. This year we actually have the hundred and fifty years of the leprosy mission, India. And back before the 1980s, there was no cure for leprosy.

So, for many of these 150 years, we could only provide love and care to these patients. But for the last 40 we've been able to provide the cure and that medical intervention to help and support people affected by leprosy.

But also, you can't ignore the fact that India is a huge country and has a population of almost 1. 4 billion people so it's not a surprise that the cases are quite high there due to the volume of people. But leprosy actually is a disease that's associated with poverty. So, it's associated with people who live in poor conditions, with people who for a long period of time have had poor sanitation, poor hygiene, unclean water, poor nutrition.

And therefore, they have a weak immune system, their immune system is lower, and so they're more susceptible to having leprosy. And then again, in some really rural areas there's limited access to healthcare, so people aren't able to or just don't know where to go to seek treatment when it's needed and the longer leprosy goes untreated, the more likely people are to have disabilities and severe implications of leprosy.

And another huge thing is the stigma the lack of awareness that contributes to the high level of cases. We see so much stigma and discrimination about leprosy across many of the countries that we work in. And a lot of that is based on those misconceptions that we were speaking about earlier.

Sudha: So, what is the focus of the leprosy mission in India, which is some of the work you lead on?

Daisy: Yeah. The leprosy mission, India we have several hospitals, leprosy mission hospitals across many of the different states and there we provide the medical care for people affected by leprosy.

So that could range from the cure to care for their ulcers. There's something called leprosy reaction. Which some people will experience, and they need to spend an extended period of time in hospital receiving medical treatment for that. And physiotherapy for people who lose feeling in their hands and feet and something else called reconstructive surgery.

Which helps with the mobility of people's hands and restoring movement and combined with the physiotherapy as well. So, the hospitals provide medical care but we have a, holistic view in that we don't just want to provide the medical care. We want to support people affected by leprosy in a range of different ways.

We have, vocational training centres in India, which is where people affected by leprosy students, young people. They come and they study a course. And the reason they may go to one of these centres is because of leprosy and stigma either they have leprosy themself or one of their family members, they might have been kicked out of school, for many years so they may have missed education and need extra support, or perhaps they've been in education, but because of leprosy struggle to find opportunities, job opportunities and so they come and they learn a skill. And then they're supported to go through the employment process.

These VTCs that we have, the centres, have a lot of partnerships with local businesses and organisations and spend time raising awareness within the organisations about leprosy and the needs of people affected by leprosy. And another huge part of what we do is advocacy and research. As I mentioned earlier, there's a lot of ongoing research to improve the treatment and understand the disease, but also a lot of advocacy to ensure people are accessing their entitlements, to ensure they're aware of their rights and their entitlements.

In India people all have access to disability certificates, which will allow them pensions. And other rights things like bus passes as well. So, it's supporting people within the community to advocate for their own rights. But then at a national level to ensure that leprosy is on the agenda.

India has one of the largest leprosy eradication programs the government run a national leprosy eradication program. So, the government are doing a lot of work to support people affected by leprosy to find, to diagnose and to treat. So, a lot of what we do at the Leprosy Mission India is we work alongside the government.

We work with them and align our projects ensure that we are providing the best possible care for people affected by leprosy.

Sudha: Yeah, that's a whole lot of stuff that you're doing a leprosy mission in India. And as you said that you align the work that you do with what the agenda for the national government is. India has a huge leprosy eradication program.

And I think they've been successful in how they've been treating TB, which is also highly prevalent in the country with the outreach at the grassroots level, but India, like we discussed earlier, it's a very complex country and delivering healthcare and also support to communities is not easy considering there are states and there are national government and then there are local governments and priorities.

So how do you deliver on your goals in this highly complex geography? How important are collaborations and partners on the ground?

Daisy: Yeah, I think it's a huge thing to be aware of in India you can cross one state boundary and that can be completely different ways of doing things. As I was talking about the entitlements and the disability pensions, you can go from one state where people might be entitled to 3,000 rupees and then you cross another state, and they're entitled to 6,000 rupees. And so, the changes between different states is huge and one of the key things is working alongside government health workers within these states. And yes, we have the leprosy mission Great Britain here in the UK, but actually we partner with the leprosy mission India and we work with the Leprosy Mission India, who are on the ground, who understand the community, who are locals and they team up with other organisations, other grassroots organisations working within the community, who understand the context and we can then really take that community based approach where we're working within the local networks.

One thing that we try and do in a lot of our work is to ensure that people affected by leprosy are central to the projects that we have, to the work that we're doing. And actually, they are the change makers themselves. Sometimes they're called leprosy champions, and they get involved in leprosy case detection, they get involved in awareness within their communities, advocacy, we have also self-help groups where people affected by leprosy will come together, support one another, train each other and how to care for their ulcers and how to really look after themselves.

And that is so key to what we do, they are central and actually, we almost follow their lead, it's led by people affected by leprosy and what they want and what they need. So that partnership is really key. And then we try as well to use as many innovative solutions.

We use things like technology or mobile clinics or things like this to overcome some of the geographical challenges.

Sudha: Like you said, it's hugely complex. It's not easy. It is like creating a whole support system in order to deliver on the program to support the communities that are affected or impacted by leprosy.

So, you know, I grew up in India and there's a huge amount of stigma attached to the disease. People affected by leprosy live on the margins of society because they get ostracized, and this is likely to push them further into poverty. What can be done to empower individuals with the disease and their families?

You've referred to some of the programs that you're doing with young people. Can you elaborate on that, please?

Daisy: Yes, of course. So, stigma is a huge thing across all of our countries but it's prevalent in India as well and that discrimination that people face, it's a huge challenge and continues to be. Back in...