Every year, on the last Sunday of January, people around the world gather together (literally and figuratively) to recognise that leprosy still has an impact in many lives, to raise awareness of this preventable disease, to lobby for the human rights of the people it affects, and to counter ignorance and discriminatory attitudes. World Leprosy Day was founded by Raoul Follereau, who chose to place it on the third Sunday from Epiphany in the Catholic calendar, when the Catholic Church reads the story of the Gospel where Jesus meets and heals a person with leprosy.
This World Leprosy Day, I talk to Brent Morgan, International Director of The Leprosy Mission, about the long fight to eradicate this treatable disease; his vision for the future; and the importance of World Leprosy Day.
The Leprosy Mission has been running for over 140 years. What are some of the successes we’ve seen in the fight against leprosy?
I think 16 million people cured of leprosy in the last 30 years is a huge success. We may have up to 5 million people living with leprosy, and over 200,000 people every year or one every 2 minutes being newly diagnosed, so there’s plenty of work to be done, but I think the celebration is that so many more people have been cured from leprosy and so many more people have been restored to their families, friends, communities and faith groups.
And what do you think has brought that about?
I think it’s the work of organisations like The Leprosy Mission and others, working alongside people affected by leprosy, not only being their champions but also helping empower them to speak for their own rights, to be demanding more from their duty bearers like governments. It’s a combination of things, but certainly what The Leprosy Mission does I think has been really, really helpful in getting people connected and involved. For example, we facilitate self-help groups, we’ve got 60,000 people in self-help groups around the world, and those people that are part of self-help groups feel far more connected to their community once they’ve been in those self-help groups so there are some really tangible things that The Leprosy Mission has done that have really helped people feel more included.
What are some of the major challenges we still have to overcome before leprosy is eradicated?
Certainly one of the challenges is around transmission of leprosy, which is still happening. I think there are a few things, firstly: how can we develop protocols to stop leprosy transmission? And there’s a lot of work being done already around that subject in the leprosy world and exciting things are happening. I think we really need to look at a sub-clinical test for leprosy, a test that would allow practitioners to know that a person has leprosy bacteria in their system way before symptoms manifest. Sometimes patients can go up to 18 years with leprosy bacteria in their bodies before it’s clinically diagnosed, so the earlier it can be diagnosed, and therefore treated, the better. A reliable sub-clinical test could have a huge impact.
There’s also still a lot of work to be done around discrimination, and a lot of our work is advocating on behalf of leprosy-affected people, with governments and so forth. For example, in India there’s a number of anti-leprosy laws that we and others are lobbying to be repealed at the moment. So there are many fronts in which we work, and a number of battles that have to be won. One’s certainly transmission of leprosy, and another one is around how to reduce discrimination.
How do you plan, as International Director and as part of The Leprosy Mission, to address those issues?
I think the important thing is to have a tangible goal that we’re all aiming for as a Global Fellowship, and what the Members of The Leprosy Mission last year committed to was to have an aspirational goal of zero transmission of leprosy by 2035. That’s a long way off, it’s still 17 years away, so that’s the aspiration we want to work towards. And if we’re able to stop transmission I think that’ll be huge in the battle against leprosy. So from there is: what are the specific battles that we need to be considering right now in order to make that a reality? We’re certainly going to have to work with others, this is a job that’s way too big for The Leprosy Mission by itself, so we have to work in coalition with others like the ILEP community, like the World Health Organization and various other UN agencies. There’s this new Zero Leprosy partnership which includes ILEP members, the WHO, the Sasakawa Memorial Health Foundation, the Novartis Foundation, and others. We’re also going to have to work closely with Neglected Tropical Disease networks, there’s a lot of networking and coalitions that The Leprosy Mission is going to need to be involved with in order to see zero transmission by 2035, but I think what we do have is we have this fantastic footprint – we run 200 projects across the world, we operate in 28 countries, we have 16 hospitals, 3 research centres, we have this wonderful footprint that enables us to be able to fight some of these battles at the ground level and I think that’s something that’s unique to The Leprosy Mission.
This Sunday we’re celebrating World Leprosy Day. What does that mean for someone on a mission against leprosy?
It’s about standing alongside people with leprosy. I was in Ethiopia one year around World Leprosy Day and just seeing the many leprosy-affected people from ENAPAL, the local leprosy-affected people’s association, coming together and being united just particularly on this one day and acknowledging World Leprosy Day – for me, being able to stand beside these people on that particular occasion was very special. Proverbs 31:8 says “Speak up for those who can’t speak for themselves”, and this is also an opportunity for us to do that, to speak up for those who maybe don’t have the position, power, status, or recognition to speak for themselves and be heard. I’ve met many people in that situation around the globe. Giving people a platform, the opportunities, the confidence – like in the ENAPAL situation a lot of the people from ENAPAL would say they didn’t have the confidence to get up in front of a group and speak, you know, just because of their leprosy. So sometimes you might use your position to speak up for a particular issue relating to leprosy (for example, Brent and Head of Advocacy Pradeep Bagival will be presenting to the UN on 14 February), but at other times you’re enabling, helping, empowering others to speak up for themselves.
Today, and in the surrounding weeks and months, people affected by leprosy and others around the world will be standing together in recognition of World Leprosy Day. Through educational outreach in communities and in media, they will encourage people with possible leprosy symptoms to come forward for diagnosis and timely treatment. Through rallies, public meetings and press conferences they will raise awareness of the facts about leprosy and the challenges it creates for people. They will speak in churches. They will liaise with governments to lobby for fundamental human rights. They will hold events to raise monetary support. They will speak up when they hear people spreading misinformation or using hurtful discriminatory language. They will pray, which is the very foundation of our work.
How are you standing alongside people affected by leprosy?