Côte d’Ivoire, July 1997. A convoy of deluxe 4x4s emerges from the cocoa and cashew trees and pulls into a village. The Land Cruisers stop at the only brick building: the health centre. The waiting villagers breathe in the dust and look on.

 A door opens. Out steps the country’s Minister of Health, followed shortly by his honourable Japanese guest. The two men greet the villagers, who mutter a ragged response. As custom dictates, the Minister asks about their families, their crops, their well-being. Everyone is fine, just fine. But one of them appears to be missing chunks of his face. His foot, too, is missing a large patch of skin – the red lines of knotted muscle show plainly when he moves.

The Japanese visitor turns to the Minister and speaks softly so the villagers can’t hear. “What’s that?” He nods towards the disfigured man.

“An infection.” says his host. “It eats your flesh.”

“An infection?” says the Japanese. “You know, I saw something like that back home.”

They tour the health centre, chat amiably with the patients and nurses (there is no doctor), and eventually return to their 4x4s. Switching on the aircons, they blast down the dusty roads back to the capital.

 

Starting to end neglect

And there the story would have ended, and the neglected tropical disease would have continued to be neglected. Except that the visitor was Dr Hiroshi Nakajima, Director-General of the World Health Organization. This chance encounter in Cote d’Ivoire stuck in the DG’s head and, when he returned to Geneva, he set up a tiny team – Dr Kingsley Asiedu from Ghana, and an assistant – initially with almost a zero budget, to investigate what he learned was called the Buruli ulcer, after the place in Uganda where it was first noticed.

Nakajima lobbied in his home country and got the Nippon Foundation to fund a new global partnership: the Global Buruli Ulcer Initiative. Work started in earnest.

As luck would have it, I met Dr Asiedu shortly thereafter. I was on a consultancy mission to find out more about WHO’s global partnerships. On a hot summer’s day, I walked along the endless corridors to a remote part of the huge WHO building. Previously I had seen the big, well-staffed, multi-million dollar partnerships – Roll Back Malaria, Stop TB – and this was going to be my first taste of a small one.

 

We don’t know anything!

I didn’t realize how small. Kingsley Asiedu, a tall, well-built Ghanaian, was at his uncluttered desk. The blinds were drawn against the heat. An old air conditioner stuttered behind him, and he mentioned that his assistant was away. He was alone, and I had the sudden thought that he might really be alone – the one person in the world who was tackling the mysteries of the Buruli ulcer. It wasn’t true, of course, as there were a few other Buruli researchers scattered around the globe. But still.

“We don’t know anything about it, really,” he said. He seemed tired – matter-of-fact, but not unconcerned. There was a quiet resolve, perhaps passion. “We have no facts – we don’t know how many people have it, what causes it. Actually, we don’t know anything.”

“So how do they treat it. Is there a cure?”

“Nope, no cure. Only surgery.”

“What, they just cut out the infected bits?”

“Yeah. It usually leaves people looking like monsters, but what can you do?”

I looked at the large, empty office, with its few scattered books and manuals, a few papers stuffed into the shelves. As the aircon flapped ineffectively in the shaded room , a feeling of hopelessness swept over me. How could one person do anything? And how odd that the barbarous horror of a flesh-eating disease was being pursued in the heart of genteel Geneva.

 

Small individual causes with big collective effects

Buruli ulcer is the classic neglected tropical disease, or NTD – one of many NTDs which affect too few people for anyone to want to do much about them. Drug companies don’t consider it worth investing research money, so medicines don’t get produced. Overburdened health systems in affected countries focus their scant resources on the major health problems, not the minor ones. And politicians inevitably address their priorities – and budgets – only on conditions affecting their biggest voting blocs.

However, while each of them only affect small populations, collectively NTDs occur in 149 countries and affect a billion people, costing developing economies billions of dollars every year. They mainly affect populations living in poverty, without adequate sanitation and in close contact with infectious vectors and domestic animals and livestock.

So when Nakajima decided not to neglect the Buruli ulcer, he was doing something quite unusual. In the 1998 conference launching the Global Buruli Ulcer Initiative, he said,

I decided to place emphasis on the fight against Buruli ulcer for the following reasons. In the 21st century, where infectious diseases are concerned, the world will have to find the means both to control major long-standing scourges such as tuberculosis and malaria, and also to deal effectively with emerging diseases such as Buruli ulcer. I am convinced that these two different sorts of challenges will have to be tackled simultaneously. If we fail to do so, the prevalence of infectious diseases as a whole is likely to increase worldwide, and the severity of specific diseases may well increase too.

This is still a good summary of why we should care about neglected tropical diseases.

To bring the Buruli story up to date, here is what we now know: Buruli ulcer is caused by the Mycobacterium ulcerans bacterium. It exists in at least 33 countries around the world. In 2014, 2200 new cases were reported. It mostly affects children. The good news is that 80% of cases detected early can be cured with a combination of antibiotics, rather than surgery.

The Global Buruli Ulcer Initiative has drawn together global expertise and led mobilization of needed resources. More than 40 nongovernmental organizations, research institutions, and foundations are now participating in the Initiative.  Nonetheless, Buruli ulcer remains a neglected disease and much work, at all levels, needs to be done to improve prospects for control.