Why the leprosy sector needs to think more like a football club
Opinion by Tim Burton, Global Communications Lead at The Leprosy Mission
One of the great strengths of the leprosy sector is that we can realistically say that leprosy transmission can be ended in our lifetimes. It is a great motivator for potential supporters, staff, and partners. It gets people excited about being a part of something world changing.
At The Leprosy Mission, we have targeted 2035 for ending transmission and for me this is a big inspiration. We’re a little over a decade away from ending one of the world’s oldest and most dreaded diseases.
But 12 years is a long time to wait before we can celebrate. Too long, in fact.
I am a big sports fan and in that world a coach will have targets for their season, maybe to win the league or avoid relegation. At the start of the season these targets feel exciting, but also abstract and theoretical. These targets are like our 2035 goal.
© Ruth Towell
Every season is also broken down into much smaller targets. Can we win the match at the weekend? Can we sign the player that we need? Can we get through the final ten minutes without conceding a goal?
These targets keep stakeholders (fans, players, coaches, the media) engaged, excited, and motivated over the course of a long season. In sport, each target met is a cause for big celebration. These are the targets we are failing to focus on and celebrate in the leprosy sector.
These targets are not necessarily for people working on leprosy every day. They are for the stakeholders that we need to engage with better. These are the people we need to get on board if we want to hit our zero transmission target.
One of the great challenges in engaging with governments and politicians is that they have little job security. If you tell a parliamentarian or a minister that we can end leprosy transmission in their country in 12 years, it will mean little to them. They have three more elections to fight before then; they need good news stories much faster than in 12 years.
The same is true for major donors, whose own stakeholders want to see tangible results. Will they want to invest in our sector if the most recent tangible result we can demonstrate is the reduction of global leprosy cases to 200,000 per year following the introduction of MDT?
© Ricardo Franco
There are other stakeholders that need this approach. Human interest stories work for the press and for individual donors, but they also want to see data. The press will write a story when they see interesting change that would be noteworthy for their readers. Donors want to see that the money that they have given is helping us to make progress towards our zero leprosy goals.
I don’t think I would find sport very interesting if every game was played in secret and we were not told the results until the end of the season, when the title-winning team starts to celebrate. We should be keeping out stakeholders engaged with lots of little wins along the way to 2035.
The above is not to say that we are not already telling engaging stories and presenting compelling data. We are doing those things, but we could be doing them better.
Last year, Wim van Brakel from NLR joined the ILEP Communications Network for a meeting to discuss some of these topics. Wim talked about the opportunities for celebration we should be seizing.
He noted that this could include no more child cases for five years or no more leprosy cases for three years. This could be at the national or the local level.
I think we could be celebrating other key milestones, such as a government that begins to implement PEP, an increase in funds for a National Leprosy Control Programme, active case finding initiatives, an exciting scientific discovery that brings us better diagnostic tools.
This could also mean regular tracking. Have we found more cases due to active case finding? Is a district starting to see a consistent decline in new cases after an intervention?
There are other sectors within the wider NTD sector that are very good at celebrating these achievements. They announce to great fanfare when a country has eliminated a disease or when a government has made an important pledge.
The WHO Task Force on definitions, criteria and indicators for interruption of transmission and elimination of leprosy (TFCEL) has identified 14 criteria for verifying that leprosy transmission has been stopped. Countries need to meet these criteria if they want to be certified as having eliminated leprosy. The WHO team are currently working on the tools to make this possible; they hope to publish in May. Once this is in place, we will have some seriously big opportunities for celebration. The first two countries to undergo this process will be doing so later this year, so get your party poppers and balloons ready.
At the risk of sounding self-interested, I’m going to start by saying that we invest in our communications people.
This does mean ensuring that the leprosy sector is equipped with communicators who have the capacity to tell our stories creatively, but it also means having well-built channels to those people. If they do not know about the success you are seeing on the ground, they cannot begin to celebrate and engage the stakeholders that you need investment from. So if you are seeing success in your work, think about who in your organisation you should be telling.
We also need to work on getting better data. Throughout the sector, there is a problem with insufficient leprosy data. Thankfully, we are heading in the right direction on this with mapping and the above-mentioned WHO work. Hopefully, as better data comes in, we will be equipping our communicators with the information they need to tell a story.
I hope that in the years to come we will be engaging stakeholders with stories of recent and tangible success. We will have videos, articles, press pieces, infographics, and advocacy materials that tell a story of a sector that is making inexorable progress towards an ultimate goal that the whole world will want to celebrate.
If we can begin to celebrate the smaller milestones, what Wim van Brakel called the ‘early successes’, we can demonstrate momentum and show potential investors that we are a sector that knows the path to doing what has only happened once before: eliminating a disease for good.
Through this, we can turn our stakeholders into the fans that will celebrate with us every goal we score and every match we win.