The Fly That Ruined the World Record (A Metaphor for Chagas Disease)

Like a fly that spoils a domino effect, in Chagas disease we sometimes unintentionally interrupt the path toward effective care.

The domino effect world record was achieved with a structure made of 500,000 pieces falling one after another, perfectly synchronized from the first piece pushed with a slight finger tap. In August 2018, in the city of Nidda near Frankfurt, a team of 20 people set out to break this record by creating a colossal circuit of about 600,000 dominoes. Everything pointed to success, but the flapping of a fly’s wings—a fly as tiny as it was untimely—ruined weeks of work. Carefully placed dominoes, positioned with millimetric precision to fall in perfect sequence, were disrupted. The fly passed through too early, knocking over one piece and triggering the collapse of half the circuit.

A very fragile mechanism

This may seem unrelated, but for someone living with one of the neglected tropical diseases (NTDs), and for those working to research or deliver care, something similar happens. One billion people worldwide affected by NTDs depend on a fragile system made up of health services, governments, private sector, and organizations involved in cooperation and research. Each piece is essential and must align with the others to achieve the goal of providing care to those in need—often in remote or underserved areas.

The flapping of a fly’s wings—tiny and untimely—ruined weeks of work

And we know that when we talk about institutions, we’re really talking about committed people. As Nilva Belo, who lives with Chagas disease in the Goiás region of Brazil, reminds us, her life changed thanks to a doctor who offered her treatment. This happened after a previous health professional had told her there was no cure or solution—an all-too-common misconception in healthcare, not just for Chagas but for many NTDs.

We are all needed in Chagas

In fact, the theme proposed by patient associations for this year’s World Chagas Disease Day—celebrated on April 14—is: “To prevent and control Chagas disease, we are all needed.”

Let’s consider one domino piece: research funding. Chagas receives less than 0.7% of all R&D funding for neglected diseases.

Chagas receives less than 0.7% of all R&D funding for neglected diseases

Another domino: treatment. There are diagnostic methods and treatments that are highly effective—especially in children and young people. They also help reduce parasitemia in adults without severe organ damage. Yet, if estimates are correct, fewer than 1% of people with Chagas receive treatment. And we’re talking about 7 million people infected and nearly 100 millions at risk.

Why Chagas treatments don't reach people

Most of these individuals live in Latin America, where the vector of Chagas disease (not a fly, but a triatomine insect known as vinchuca, barbeiro, or kissing bug) is endemic. In other countries like Spain or the United States, there are tens of thousands of cases, mostly through congenital transmission, and to a much lesser extent, blood transfusions, transplants, or lab errors. It’s a global health issue. So what prevents treatments—often provided free of charge—from reaching those who need them?

Sometimes we are the fly

Multiple barriers stand in the way. But just as we said before that institutions are made up of people, we must also remember that barriers are often tied to people. And sometimes, even with the best intentions, we too become like that fly that disrupted the world record attempt.

One person’s decision can save lives

If we don’t stay focused on our tasks or fail to coordinate with others in the Chagas community, we might interrupt the chain that should lead to effective care for those affected. Nilva reminds us again: one person’s decision can save lives. Political, financial, systemic, operational decisions. And behind them all, there are people.

Chagas as a metaphor

Chagas is not only a disease but a metaphor that captures the neglect faced by many other NTDs. The good news is that many people are committed to eliminating these diseases as public health problems. That’s the goal envisioned for 2030. But we cannot afford to forget the fragility of the environment surrounding these diseases and the systems set up to respond. Alone, we may be as fragile as a fly inside this huge mechanism—but together, we can cause or prevent the dominoes from falling into place.

It’s beautiful, even hypnotic, to watch a giant domino effect. It’s a metaphor for how far we can go through cooperation, each person playing a role and having a place in the chain.

It’s beautiful, even hypnotic, to watch a giant domino effect. The world record, in fact, has been broken again in several categories. This is yet another metaphor for what we can achieve together—as dominoes, as flies, but above all as people with a role and a purpose. May this April 14 remind us that our decisions, too, can save lives.