Talking TED: Ellen Agler on eradicating disease (Overture magazine)

When I catch Ellen Agler on the phone, she’s in London for the United Kingdom launch of her new book Under the Big Tree: Extraordinary Stories from the Movement to End Neglected Tropical Diseases, which she cowrote with Mojie Crigler. After becoming CEO of the END Fund, a private philanthropic initiative dedicated to ending neglected tropical diseases (NTD), Agler has managed to make these overwhelming and complex health problems understandable to everyone—a major achievement.

In her book, Agler writes about how her group has managed to mobilize help in the poorest of places, and describes the devastating impact of these diseases on the people she has met. It is earnest, authentic, and so accessible that it is getting almost as much attention from the UK’s general public as those working on global health projects.

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The tropical diseases the End Fund is working to eradicate are known as the “big five”: intestinal worms, schistosomiasis, lymphatic filariasis, trachoma, and onchocerciasis (river blindness).

Eradicating intestinal worms is critical. Doing so can reduce absenteeism in school children by up to 30 percent and generate a return of 82 percent per year through higher earnings.

Those who saw Agler’s TED Talk about the END Fund may not remember all the details, such as the fact that intestinal worms affect as many as 1.5 billion people worldwide, or that the most common are hookworm, ascaris (roundworm), and trichuris (whipworm), but they will remember her friendly, conversational tone and the huge jar of worms she brought to make her point. Containing around 200 worms, the jar holds about the same number a child could have in her stomach while suffering from only a moderate worm infection. This is exemplary of Agler’s way of making sure these health problems are no longer neglected.

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Her strategy is working, because since launching in 2012, the World Health Organisation (WHO) reports that the global NTD community has treated 1 billion people—and the END Fund’s work plays a crucial role in this global NTD ecosystem. She spoke with Overture about her work with the END Fund and the topics from her book.

This book launch is an exciting new chapter in your life and for the END Fund. What do you hope it will achieve?
I think it’s doing what we hoped in many ways, which is providing an easier-to-understand narrative and telling really human stories about people on every level. It’s not technical or jargony and includes people living with the diseases. I really tried to capture a whole constellation of perspectives and show what it takes to have a global movement. A lot of collaboration, a lot of moving the needle at all these different levels, from community to global policy, so a lot of people have really commented on the book as being a helpful case study for other diseases that we might want to tackle globally.

I’ve been working in global health for close to 25 years, so in many ways it is a continuation of just trying to focus on the work and have an impact and help improve lives, but the thing that’s different about neglected tropical diseases—because they affect 1.5 billion people—is that the scale is massive, but so is the opportunity to bring solutions.

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How was the book received in the United States and elsewhere?
What’s amazing is that we had our first launch in New York City, which is where the headquarters of the END Fund is, and then a week later we did an event in Doha [in Qatar] at the World Economic Forum—a very global event. It is just a great tool to give all the policy makers, CEOs, and heads of civil society groups and heads of state. We had another book event in Harare, Zimbabwe, where they were so excited to have part of the Zimbabwe story in the book. We donated books to the university—all the university students wanted to read it.

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It really feels like you’re closing a gap on subjects that were traditionally restricted to academic journals by telling stories that people can relate to.
I really appreciate you saying that, as that was the goal. We’re trying to demystify all the different elements that you need to have people involved in this—from a policy perspective, philanthropy, medicine, public health, and marketing. I see people hosting book clubs and discussing this book in Middle America, and it’s being read by policymakers. It has been a great communication and advocacy tool.

Read the rest of the interview on Overture magazine’s website.

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