Shining a light on neglect

Photo: Mo Scarpelli / The END Fund
Ellen Agler, MPH ’04, visiting Idjwi Island in the Democratic Republic of Congo, where more than 90 percent of residents suffer from one or more neglected tropical diseases. Jacques Sebisaho, right, a natie of Idjwi and founder of a nonprofit providing health care on the island, recently marveled at how the financial aid that helped Agler compelte her MPH degree was directly benefiting people in his home country. Photo: Mo Scarpelli / The END Fund

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.

From Montana to the world

Agler continued with journalism during and after college. But soon came a second turning point. “An editor told me I was getting too attached to the stories I was writing,” she says. “There was an influx of Bosnian refugees in Boise at that time who were resettling after the war. I wrote a story about them and met families struggling with grief and trauma and culture change. I ended up volunteering for some Bosnian families to help them get set up in their new lives. Then I wrote a story about the Idaho Commission for the Blind, and I ended up volunteering to read books for people who were blind. I got so into the cause-related pieces I was writing about that I began thinking maybe I should be doing more social-impact kind of work.”

Agler found her way to Operation Smile, a nonprofit that pro- vides surgeries to repair cleft-lip and palate conditions, a project for which she managed teams of medical personnel and supplies for medical missions around the world. “A little bit of money, a little bit of organization, goodwill, compassion—these are the ingredients for making the world a better place,” she learned. “It’s very personal. You can have systems and macroeconomic approaches, but actually people are changed by people.”

After two years with the organization, she realized that her goal—and she herself—had changed. “I’d become addicted to impact, not just diving in and out of stories,” she says. “I thought—and still do—about living a life of value, about spending my entire life dedicated to helping others, about how I could be my best self and help others be their best selves.”

Health as a bridge to peace

Offered the opportunity to set up Operation Smile’s first permanent in-country comprehensive care center, in Bogotá, Colombia, Agler lived in that city from 1999 to 2001, a time of great national instability. To create programs, she drew upon her Operation Smile experience in Gaza and the West Bank of bringing together Palestinian and Israeli surgeons. “That was the beginning of my understanding of how health can be a bridge for peace and that citizen-level diplomacy can happen through this kind of work,” she says.

In Colombia, Agler and her colleagues teamed up with the minister of peace, the head of the FARC guerrilla group, and the president’s and first lady’s offices to organize health-as-a-bridge-to-peace initiatives, through which they conducted surgeries for children with cleft lip and palate in conflict zones and in zones controlled by the guerrillas.

“One of the boys we operated on was a teenage FARC soldier, and some of the medical team caring for him had had family members kidnapped and killed by the FARC,” Agler remembers. “Yet the soldier was still just a kid with a deformity that even in his community made him isolated. These are little seeds of peace that we can generate. It was beautiful work that brought a lot of people together who never thought they would be.”

Working in Colombia also helped her realize that humanitarian work was her true path. To prepare for this career, she attended the London School of Economics and received a master’s in international development studies with a focus on nonprofit management, while also working full time setting up Operation Smile as an organization in the U.K.

Next move: Harvard Chan School

Her search for a specialty within international development led Agler to the Harvard T.H. Chan School of Public Health, where she earned an MPH in international health. She calls Jennifer Leaning, François-Xavier Bagnoud Professor of the Practice of Health and Human Rights and director of the FXB Center for Health and Human Rights, “an icon for me” and especially remembers participating in the Humanitarian Studies Initiative.

For her part, Leaning notes that Agler was “essentially a social and intellectual beacon” for her fellow MPH students, many of whom were already accomplished doctors and other health professionals. “In her questions and observations, they realized they were dealing with someone who’d had more world experience than they had,” says Leaning. “Without being a medical person, Ellen exemplified and, in a quiet way, transmitted the major power of medical ethics. I think that’s an important aspect of her standing in public health. She understood the difficulties but was just alive to the positive possibilities—and people felt that.”

Following her time at the Harvard Chan School, Agler moved to California to work with the International Medical Corps, which conducts complex emergency work. After the tsunami in East Asia in December 2004, she traveled to Banda Aceh, Indonesia, to treat tsunami survivors, bring together medical teams, and set up health centers. She later oversaw programs in Burundi, Darfur, and Somalia, and ultimately returned to Operation Smile as the senior vice president for global programs. During all those stints, she drew on knowledge gained at the School, including biostatistics, epidemiology, and global health system strengthening. She also cherishes the copy of the Universal Declaration of Human Rights that she received at graduation. “I always have that framed next to my desk,” she says. “It lives with me.”

Going to the end

When Agler received a call from a recruiter asking if she would be interested in joining the END Fund—then a startup with significant financial backing and a big vision—it revived a Harvard Chan experience. “I remembered my Harvard ethics class and the debates we would have about making decisions around public health,” she says. “It involves decisions about your personal life as well, and if you want to do the greatest good for the greatest number, why not dedicate your energy and your time to do something that affects a billion people? It was like a fire got lit under me. I started learning everything I could about neglected tropical diseases.”

In 2012, now with a husband and 2-year-old daughter, she became the END Fund’s first employee, distilling the lessons from her early years in humanitarian work. “This is not a hierarchical world anymore. This is a collaborative world,” she observes. “As one my friends and mentors, Jeff Walker, reminds those of us working on social causes to ask ourselves, ‘How do we minimize our importance in order to maximize our impact? How do we lower ourselves to a higher cause?’”

Under her leadership, the END Fund has raised more than $50 million and last year helped treat 45 million people at risk for or suffering from neglected tropical diseases.

The organization works through local partners, through building capacity, and through supporting organizations with a track record of tackling the problem effectively. And while pharmaceutical companies donate nearly all the necessary medicines, delivery is uncertain—a key impediment to ending these catastrophic diseases. Agler’s response: “Let’s get on with it. Let’s solve the problems like this that really are solvable.”

Her former teacher, Leaning, agrees and is pleased that Agler is on the case. “This zest for what lies ahead is a very important quality in a human being,” says Leaning. “People like Ellen who have this quality know the perils but are eager to surmount them. She has an enthusiasm for life that is almost wondrous.”

Jan Reiss  is assistant director of development communications and marketing.