Ellen Agler wants the world to stop turning a blind eye to five devastating—and easily prevented—diseases of poverty.
When Ellen Agler, MPH ’04, met Oumar three years ago in Mali, the teenager was wearing a soccer jersey—fitting attire for his favorite sport. But he could never play the game that delighted him: His legs and feet were huge and disfigured, the result of elephantiasis, a mosquito-borne parasitic infection that causes extreme swelling in the extremities.
Not only was Oumar unable to play soccer, he also could barely walk. The children in his village tauntingly called him “Big Foot” and “Boy Who Can’t Run.” And while all of his nine siblings attended school, he was dispatched by his parents to beg on the side of the road during the day, “because people will feel sorry for you.” When Agler asked him what he would do first if he had normal legs and feet, he replied, “I would run straight to school like the other kids.”
Also known as lymphatic filariasis, elephantiasis is one of the five most common neglected tropical diseases in sub-Saharan Africa; the others are intestinal worms, schistosomiasis, trachoma, and river blindness. This devastating quintet inflicts suffering and chronic disability on the world’s most impoverished people. Agler met Oumar on her first trip as chief executive officer of the END Fund—an organization dedicated to ending neglected diseases. The encounter reinforced her determination to shine a light on the often-shocking afflictions the world chooses not to see.
Neglected diseases also reinforce cycles of poverty, persisting in communities where residents have scant protection from insects that transmit disease and where access to medical care and prevention education is limited. Because of their chronic and disabling impact, the infections impede a nation’s progress in education, economic growth, and overall development.
Worse, they cause stigmatizing conditions, their blinding and disfiguring complications ostracizing individuals from their own communities. “These are diseases that affect the poorest of the poor, the most marginalized people in our world,” Agler says. “As such, these infections—and the people who suffer from them—have not traditionally received much attention. We are working to change that.”
The power of determination
Born in Montana, Agler grew up moving often with her father’s military assignments. Residing in Germany for several years when she was young helped her view the world as interconnected. “I had a ‘one global village’ concept even as a kid,” she says. “Living in so many different places made me very open, flexible, curious.”
For years, she had focused on a single dream: to become a journalist. At 15, by then in a small town in Idaho near a military base, Agler traveled—unbeknownst to her parents—to Idaho’s big city, Boise, some 50 miles away, to begin the serious pursuit of her desired future. She took a portfolio of articles she’d published as an intern at the weekly Mountain Home News to editors at the Idaho Statesman, the state’s big daily. They offered her paid work as a freelance writer on the spot.
Her next tactical step was to present her parents with a written proposal that included the name of the Boise high school she had chosen and a budget of how she was going to support herself. Although initially taken aback, her parents were very encouraging. In the first of several pivotal moments throughout her life, as a junior in high school and barely 16, Agler moved to Boise on her own, attended school, wrote for the newspaper, met a network of political leaders—and was noticed. A state senator asked her to volunteer as his campaign communications manager, and she became known as a superb political speechwriter. At 17, as an intern in the governor’s office, she helped write major speeches for then- Governor Cecil Andrus, who had been secretary of the interior under President Jimmy Carter.