Here's how talking about NTDs makes advocacy stronger

Opinion by Tim Burton, Global Communications Lead at TLM International

Here's how talking about NTDs makes advocacy stronger

A couple of years ago I was talking to a diplomat at the United Nations in New York. His country was one of the leads on the UN’s major conference on the Sustainable Development Goals (SDGs), and my goal was to persuade him to include a reference to Neglected Tropical Diseases in the Political Declaration that came out of the conference.

I spoke to him briefly in a busy corridor after a side event as he was rushing to his next engagement. He was dismissive at first. The SDGs are massive in scope and there were dozens of special interest groups vying for a reference in the Political Declaration. In fact, persons with disability were one of the groups that had not received a reference in the first draft, despite having a UN Convention affirming their rights. When he heard me asking for a reference to Neglected Tropical Diseases, what he heard was a niche group asking for a reference in a document that affected the whole planet.

He said to me: “I’m sorry, but the declaration is already too full and I don’t think we’re going to find room for a small issue like this.”

My response was: “Really? Neglected Tropical Diseases aren’t a small issue. They affect 1.7bn people across the world.”

That was when he changed his tune. I walked away with his business card and a promise to look at the language I sent over to him. In the end, it was the number that made the difference.

I could have told him about how dreadful some NTDs are. I could have told him stories of people who had lived with the effects of NTDs. I could have focused only on leprosy, as I was representing The Leprosy Mission. All of these things might have made a difference and if I had more time, I might have tried them. But my time was short and he works at the UN, where ‘big picture’ is the raison d'être, so I went for the biggest picture I had: 1.7bn people, or, put differently, 1 in 5 people.

Numbers make a huge difference.

If a TLM team is meeting with their country's National Leprosy Control Programme, it is (hopefully) not their job to convince the NLCP team that leprosy is an important issue.

However, if you are meeting with the Minister of Health, a Head of State, a Development Minister, or a UN Diplomat, these are people who are looking at big picture issues and for them leprosy can look like a small issue.

However, if you talk about NTDs, the numbers change dramatically. You can get the attention of a very busy person and buy time to go into depth on issues that matter.

NTD messaging is powerful messaging

One programme, multiple diseases

As we covered in our first article in this magazine, approaches to NTD interventions and programmes are similar, as are the target audiences. When we conduct advocacy with governments, it is good to remember that a programme we are proposing can tackle more than one disease. As Jemish said, government officials are looking to see how far their money can go. With a cross-cutting approach to NTDs, the money can go far.

Progress towards Universal Healthcare

As Uniting to Combat NTDs highlight on their website: “By tackling NTDs, a country strengthens its health systems, improves its capacity to deliver comprehensive healthcare, reduces disease burden and improves population health, and boosts multisectoral collaboration… As diseases of inequity, NTD programmes can provide a gateway to and act as an indicator for equitable progress towards achieving UHC.”

Attention on NTDs is growing

This is relative, of course. NTDs are neglected diseases, so they are receiving far less attention than many other diseases. However, investment in NTDs is growing. These diseases have attracted the attention of big players, like the Bill and Melinda Gates Foundation and the late Jimmy Carter. At COP28 in 2024, $777m was committed to the fight to defeat NTDs. Attention is turning towards this group of diseases and this is providing opportunities for us to attract the attention of policymakers. At times, this may be more fruitful than trying to get attention on one single NTD.

There is room for growth in NTD advocacy

The WHO have developed an ambitious Roadmap for NTDs and with that comes a set of concrete targets that we are some way from achieving.

Advocacy efforts focussed on these targets provides us with tangible steps that we can ask governments to take which will benefit all NTDs.

Share of countries with NTDs integrated into national health strategies/plans

Target: 90%

Actual: 15.8% (2022)

Number of countries that adopt and implement integrated Skin NTD strategies

Target: 40

Actual: 12 (2022)

Share of countries reporting on all relevant endemic NTDs

Target: 90%

Actual: 18.5% (2022)

Share of countries with guidelines for management of NTD-related disabilities within national health systems

Target: 90%

Actual: 10.7% (2022)

Learning from and finding space in the Disability Sector

There are 1.6bn people affected by NTDs in the world today and 1.3bn people living with disabilities. However, the Disability Sector is very well-organised, with vast networks of Organisations of Persons with Disability and a UN Convention assuring the rights of persons with disability. By comparison, the NTD Sector is far less organised, with only a few Organisations of Persons Affected by NTDs.

We should seek space for persons affected by NTDs within the Disability Sector, but we should also learn from their success. So much of that is thanks to the efforts of self-advocates. Similar growth in the NTD sector must surely start in the same place.

Picking your moments

Not all advocacy moments require a focus on NTDs. Often it is important to focus specifically on one disease and to tell stories about that disease with depth and nuance, as Anna Georgeson highlights elsewhere in this magazine.

Advocacy around NTDs serves an advantage when it can:

Help you to get a foot in the door with a policymaker by drawing their attention to the bigger picture
Lead to policy changes and interventions that can have broader impact, beyond just one NTD

We should search for these opportunities whenever possible. If you are interested in advocacy across multiple NTDs, please reach out to us so we can discuss this.

The Big Picture

The message is not that leprosy is a small problem, the message is that NTDs deserve the same amount of attention that diseases high on the Global Burden of Disease chart receive. By highlighting the bigger picture, we can show how leprosy - and indeed any NTD - fits into a broader narrative of inequity, poverty, and neglected health systems.

Drawing attention to this interconnected reality not only drives action for individual diseases, but also fosters a collective impact that addresses the root causes and creates lasting change.

At well-chosen moments, focusing advocacy messaging on NTDs is absolutely the right thing to do.

WHAT ROLE SHOULD NTD ADVOCACY PLAY?

It should be our primary message - it's how we get attention and bring in more resources
My organisation should do more NTD advocacy in partnership with other NTD organisations
It's sometimes helpful to refer to NTD messaging in our advocacy
NTD messaging distracts from our organisation's core issue and so it should play a small role at most