What is not seen is often not prioritised

How the media cannot be ignored in our fight to defeat leprosy

What is not seen is often not prioritised

‘What is not seen is often not prioritised’ is a quote from our team in India. It is a country with the highest burden of leprosy in the world, and yet it is also a country of 1.4bn people and swirling, endless different agendas.

In the context of most endemic countries, leprosy is rarely high on the public agenda and if we do not fight for more coverage, it is easier for it to slip off the radar of policy, funding, and commitment. If we want the disease to be prioritised in India and countries across the world, that fight is worth having. But what do we need to do to ensure leprosy is of interest to the media?

In this article, we consider how that fight is already happening to good effect and what we can learn to ensure leprosy is always on the agenda and prioritised.

‘In the journey towards a leprosy-free India, sustained media engagement is not merely a communications activity, but a strategic advocacy tool designed to keep the disease visible and relevant.’

Subhojit Goswami, Senior Program Manager - Advocacy & Communications, TLM India

This is how we keep the government honest - Nigeria

In Nigeria, engagement with the media started when a number of the big media houses were using offensive language when talking about leprosy and disability. Our team reached out to them to offer training and this led to some really positive relationships with journalists. Pius Ogbu Sunday is the Head of Programmes at TLM Nigeria and he explains what this looks like today,

“We speak to them now when we have a story we think they'll find interesting. If we can help facilitate it, they will sometimes travel to a community to investigate the story further. This has become an excellent way to hold national and local governments accountable. If the coverage shines a negative light on them, they are much more likely to take action.”

In 2024, Nigeria faced a critical shortage of Multi Drug Therapy, meaning thousands of patients were not receiving the antibiotics they needed. The government and WHO were slow to overcome the impasse, but the pivotal moment came when TLM Nigeria supported an Organisation of Persons Affected by Leprosy to hold a press conference which shone a light onto the human rights abuses that were being faced. That was a moment of public accountability that was only possible through the media and which led to the change that patients so desperately needed.

Increasing the incentive - Bangladesh

Journalism is a competitive profession. It is hard to break through as a journalist, even harder to make a name for yourself. Beyond this, the fight to earn more clicks, more views, and more advertising revenue can create a siege mentality.

In that context, young journalists are always looking to burnish their CV and media outlets are always looking for opportunities to increase their grandeur. With this in mind, TLM Bangladesh's brilliant idea was to create an annual media award for the best coverage of leprosy in the country. The award has resulted in more than 70 news reports on leprosy related issues.

Among this coverage have been talk shows where persons affected by leprosy speak on panels alongside government officials and other leprosy experts. It is an excellent opportunity to keep leprosy on the government agenda and in public awareness.

A talk show on leprosy for World Leprosy Day

Making leprosy relevant - India

India is a vast, dynamic country where journalists are bombarded with opportunities for coverage and stories. In that context, the key to keeping leprosy on the agenda is making it relevant. As such, TLM India has focused on the intersections of leprosy with social determinants of health equity, such as climate change and nutrition, increasing the relevance to broader policy and public discussions in the country.

This approach has enabled the dissemination of research findings, case studies, and programme evidence to a much wider and relevant audience, often crafted as constructive inputs to policy discussions.

This has included their evidence-based report on the climate dimensions of leprosy, which highlighted how climate disasters and climate change in India is contributing to the spread of disease. You can see coverage of that in The Hindu.

In collaboration with the Rotary Club of Delhi South, TLM India has also launched the ‘TLM Open Circle’ podcast series which aims to mainstream conversations on leprosy. The podcast explains complex concepts and trends on leprosy related issues, positioning TLM as leaders and technical experts. The discussions have attracted nearly 20,000 views.

Through this work, leprosy is staying on the public agenda in India and TLM are contributing to important policy discussions to the benefit of persons affected by leprosy.

TLM's work on the intersection between health and climate change led to digital coverage from The Hindu, a major national publication in India

Building grassroots connections for journalists - Nepal

Local journalism is a specialist art which requires a wealth of networks and connections. This is something that TLM Nepal has recognised and is working on, to the benefit both of journalists and those fighting the leprosy cause.

Through their Dignity First Project, TLM Nepal trained 193 journalists between 2022 and 2025. They taught them about leprosy, prevailing stigmas, and their crucial role in contributing a stigma-free society. However, they discovered that journalists would often produce one story on leprosy and consider that their commitment was over.

The team in Nepal decided that ongoing relationships with journalists would be crucial in ensuring ongoing coverage. Their goal now is to connect local Organisations of Persons Affected by Leprosy and Self-Help Groups with local journalists so they can report on their successes as well as on the challenges they are facing within their business and the local economy. It is about creating ongoing local relationships so that leprosy and the needs of those affected remain a part of conversation.

A media training session in Nepal

Tips for your work with the media

Media work is not always the first thing we think of when we consider how to end transmission of leprosy, but if we don't consider its role in setting policy agendas and raising awarness, we are missing an opportunity. If you want to engage more with the media in your country, here are some tips for you to consider.

Why now?

One of the most important things to consider when engaging with journalists is time. Is what you are saying timely? Why should they write about this now? This is why days like World Leprosy Day are so useful, because it gives a journalist a reason to engage with a topic on a particular day. The success of the Nigerian press conference on MDT was in part because the issue had gone on for so long that it had become pressing - it was timely. Consider how you can make your outreach to the media timely.

Why this?

As well as being timely, your work with the media needs to be relevant. This is what our team in India did when they took another topic on the agenda - climate change - and linked it to leprosy and the broader health agenda. How is your story relevant to a journalist? Consider what their priorities might be and search for journalists whose priorities might overlap with yours. Your job is to help a journalist see why their audience should care about your topic.

Make life easier for the journalist

Journalism is a fast-paced world and sometimes a story won't be picked up because it is not worth the effort it would require. Part of the trick to working with journalists is to support them with what they might need. It might be that you provide insights or quotes from leprosy experts or persons affected by an issue. Or, as was the case in Nigeria, you work with the journalists to support their visit to the community in question.

Tips for your work with the media

Build ongoing relationships

If a journalist has shown interest in leprosy, that's a really good sign. Consider the first three points and how you can continue to feed them timely, relevant stories that are easy for them to work into something good. Set them up with relationships in communities, just as TLM Nepal are doing.

If you are responsive and helpful for a journalist, they'll also start to come to you when they need a quote or background information. Like this, you can make leprosy relevant to issues across the spectrum, as TLM India have done.

Go carefully

Any time you engage with the media, it comes with a reputational risk. Remember that you do not control the narrative and that a journalist does not always share your priorities; if it serves their interests, they may report something that is bad news for you.

This is not a reason to stay away from media work, especially when it could play a potentially transformative role, but it is a reminder to be conscious of what you say and remember to speak off the record - or not at all - if you are not happy to be quoted on an issue.