Named as one of Fortune Magazine’s “World’s 50 Greatest Leaders” in 2019, Ellen Agler is a renowned changemaker and public health leader who has worked in the global health and humanitarian response for over 25 years in more than 70 countries, for organizations including Operation Smile and International Medical Corps. She is the CEO of The END Fund, a private philanthropic initiative set-up to control and eliminate the five most commonly Neglected Tropical Diseases (NTDs) in the world, affecting about 1.5 billion people. During her tenure at Operation Smile, Ellen managed international programs across 4 continents; worked on “health as a bridge to peace” initiatives bringing together Israeli and Palestinian surgeons; and organized medical programs in partnership with the government, civil society and guerilla groups in conflict zones in Colombia. She has also led international operations for International Medical Corps, with a focus on international disaster response and delivery of medical care in complex humanitarian emergencies in over 20 countries. Ellen serves on the board of The Legatum Institute, a London-based think tank that promotes policies that lift people from poverty to prosperity, and the World Economic Forum’s Global Health Security Advisory Board. She is also the co-author of Under the Big Tree: Extraordinary Stories from the Movement to End Neglected Tropical Diseases, through which she has managed to make these overwhelming and complex health problems understandable to everyone.
How do we live a life that is aligned with our highest values? What transformative power does the role of service hold in our lives? When we feel a deep concern for humanitarian issues, how can we move from inaction to action and make a meaningful, positive contribution towards building a healthier and happier society? And how can we mobilize resources, intelligence and support networks, not just for individual and organizational success, but for humanity’s success?
Find out from pioneering changemaker and public health leader, Ellen Agler, in conversation with Dr. Hitendra Wadhwa, on Intersections Podcast.
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Warm welcome to Intersections. Our aspiration in this podcast is to help all of us explore our fullest capacities individually and collectively, to be able to live meaningful lives and do our life's most beautiful work.
We have today in our midst somebody who exemplifies this quality of doing her life's most beautiful work and expanding herself to her fullest capacities so wonderfully, so specially, Ellen Agler, a renowned change maker, public health leader.
She's worked in global health and humanitarian response for over 25 years in more than 70 countries. Organizations she's worked for include, Operation Smile and the International Medical Corps. She's been named as one of Fortune Magazine's World 50 greatest leaders recently. She is today the CEO of The END Fund. This is a philanthropic initiative set up to control and eliminate the 5 most commonly neglected tropical diseases in the world that affect over 1.5 billion people. Ellen serves amongst others on the board of the World Economic Forum's Global Health Security Advisory and is the co-author of the book "Under the Big Tree: Extraordinary Stories from the Movements to End Neglected Tropical Diseases."
In her educational life, she has a degree in International Health from the Harvard School of Public Health and in Development studies from the London School of Economics. She has also completed a study in conflict resolution from the university, the Javan. I'm going to mess that up. I'm going to ask Ellen to come and pronounce that for me. It's in Spanish in Bogota, Colombia.
Ellen, what a joy and an honor to have you in our midst. Thank you for joining us today.
Hello! Wonderful to be here. Thank you so much for such a kind introduction.
Before I move forward, help me correct my great mess up with that pronunciation of the university in Bogota given my lack of knowledge about all things Spanish.
Universidad de la Javeriana. I had a great opportunity to live in Bogota for a couple of years. It's been over 20 years now. I was there from 1999 through 2001. Actually, that's where I was when 9/11 happened. I took courses on conflict resolution. It was a certificate program that was a pretty small group, but it was attended by someone who was the chief of police, someone who was a former member of the M19 Guerrilla group, and someone who was working on the Peace Commission. It was just a phenomenal, interesting, very active group. One of my biggest excuses for taking that course was, everyone was trying to practice their Spanish with me when I was trying to learn Spanish and I figured if I did an academic course where everyone had to speak Spanish, I would learn better. But it was a remarkable experience. But thank you.
Yeah, I can only imagine. It's a glimpse into your very adventuresome spirit. Have you over the course of your life then, in so many different parts of the world, ended up learning other languages as well? Is that one of your passions?
Unfortunately, like many Americans, I think I didn't take learning languages very seriously growing up. I took a little French, I took a little Spanish, but it wasn't until I started working in International Health that I thought, "Oh, this would be incredibly useful to actually go deeper and have another language." So I speak Spanish and maybe a little Portuguese from my time living and working in the region. But otherwise, it's something I wish I was more invested in because it's so beautiful. There's a different part of yourself that you tap into when you speak a different language. There are things that I feel more comfortable saying in Spanish or seem cheesy to say in English, but seem beautiful to say in Spanish or there's just a soul to a language that opens up a new part of yourself as well as helps you connect with the culture and people in a completely different way.
What languages do you speak, Hitendra?
I'm not that super literate from a language standpoint. Hindi, which is my native language, a little smattering of Punjabi, which is kind of like a sister language, not too disparate from Hindi and then English. I have a lot of regrets, I'd love to have known Sanskrit and other ancient India's languages, the classical language from India, the language of India's religious scriptures.
I would have loved to know Urdu, which is a fusion of Persian and Hindi that manifested under Mughal rule in India, and that has been often the language of some of the arts in Northern India and in the Mughal periods of the last several hundred years prior to British rule. Then of course, some of these international languages that I would have loved to. My daughter has quite a gift for languages but somehow that passed me by.
I don't know. For me 3 languages are pretty good.
Well, I agree with you that knowing at least two can have a very liberating impact on one's own psyche, right? Because you're able to step back then from 'a culture' and 'a way of being,' to another culture, another way of being, and that allows you to have more capacity to be able to have perspective on each of those cultures and therefore make more choices about what you're going to do in your ways of thinking. I definitely see that value in my switching back and forth between Hindi and English.
What do you find about yourself is able to be expressed differently in Hindi versus English?
Well, I grew up with a deep draw towards the pursuit of enlightenment, the devotional connection to the creative spirit. There are these things called bhajans, these chants, this devotional music that made a deep imprint on me in those early years. There is at times a celebration that happens, at times where you're meant to stay up the whole night, just getting together with the harmonium, the musical instrument. Then somebody chants and then somebody else chants and then everybody joins as a group. You just keep going with that devotional ardor. I was just revisiting George Harrison's song, My Sweet Lord. Are you familiar with that one, Ellen?
I'll have to look that one up. I haven't actually listened to his music from that period, but I love listening to, like, Krishna Das' devotional chanting and Jai Uttal, and some of the Americans who picked up that devotional call and response.
Okay, I'll send you a reference to this one. It's a really beautiful way of a westerner coming in and tuning in to that sensibility and then bringing it into a form that could permeate popular consciousness in America and beyond. It is a beautiful expression of that same sort. Anyway, when I'm chanting in Hindi, it has a certain very special impact as one example.
One of the things with chanting in Hindi is, is it called kirtan in the Indian context as well?
Yeah, kirtan.
That is just another way of singing about love of God and all of the different manifestations. Bhakti yoga is one of the forms of yoga that is just about how to express love and love of others, love of the divine. Thinking about those kirtan songs, I always think of them as love songs, and they really do. When you're in a group of people singing and chanting the divine, it just can be really elevating, inspiring and just kind of transcendent in a way that you think about Rumi and the whirling dervishes dancing and this particular tradition of singing, it just elevates your sense of being and singing in community has an amazing way of just connecting you with everybody else in the room. You may not know them, you might not even know their name, but you're connected through this vibration of your voice.
Yeah. So true. Everything you say has such deep resonance for me. I'm flashing back to the time that we were in old Istanbul, very keen to experience a little bit of the whirling dervishes and go up there. We were a little cautious because we had a small child with us, our daughter who was a little baby at that time. We were fearful that what if she breaks into a cry or something and is impatient and all of that in the middle of this very devout sacred moment. So, the Islamic orchestra starts and these whirling dervishes are doing their very mystic twirling, it was incredible. It went on for about an hour and a half and she was just so captivated herself. There's something in just that energy there, which transported her soul, I think, to the same place it did ours.
I want to invite you to go back to the very early days. I'm curious about what got you started in pursuing social impact causes and even prior to that, I know that you were pursuing journalism for a while and how even that got started at a really young age. So, if you go back to the time you were 14 or so, there's a very remarkable glimpse that we get into the fierceness and independence in you, that from a very early age was kind of charting your own path. Could you talk a little bit about those early days when you were flying out of the nest?
Well, it's interesting because you talk about moments when you were 10 years old of feeling connected to the beginnings of your spiritual journey. When I grew up, my dad was in the Air Force, and we moved around a lot. I think that had a lot of influence on the course of my life in terms of being around a lot of different cultures, a lot of different types of people, different communities, and learning to be an observer. To recognize that just needing to figure out what the new dynamics were of where I was meant stepping back, being the observer, trying to test the lay of the land and recognizing that things that were deeply held by a community in one place weren't even considered in another place. So it made it just confusing to me that often when people just were so strongly held to certain beliefs that they thought were universal, I think it led me on a quest, "What is universal and what connects people?"
Even though I might have mentioned to you when I grew up, my father was Republican, my mom is Democrat, like a relationship that hardly even happens anymore. But like really having so much love and respect for each other. I loved writing. I remember when I was really young, I used to have slumber parties that were all about bringing your novel in progress and we'll all work on it, and I just loved the art of observation.
At one point, we moved from the Washington DC area when I was about 14 to Mountain Home, Idaho, which was a town of 15,000 people, pretty remote. Probably, it's funny, because I've lived in many countries and cultures, but somehow that within the US experienced the greatest culture shock that I ever have. I think at the time, I wanted to write more. I looked, they didn't have a school newspaper and I got connected to the local newspaper there and they were like, "Well, why don't you just come and work for us? Why don't you come and have an internship here?" I just fell in love with that opportunity. It was like, Oh my God, I have this free pass to go ask people questions and dig into finding out what's behind things and write things that are relevant to people in the community. That was a whole range of things that I got to do in that first journalism role.
Then when I decided I really wanted to move out of that small town into the capital of Idaho, Boise, Idaho, I presented a whole proposal to my parents, written out and costed and where I'm going to live and where I'm going to go to school. I had already lined myself up with speaking to the largest paper, which was like USA Today, Gannett paper. They offered for me to come and do some articles there and work as a copy editor. That was probably the flying from the nest at 16, I moved out in order to pursue my career as a journalist.
Fast forward a few years, I had an editor who was saying, you're getting way too attached to the stories that you're doing, because I would do all these stories on, at the time it was Bosnian refugees that were resettling in Idaho or the Idaho Commission for the Blind was having financial troubles, or there were so many different things that I would end up volunteering for that community or that refugee center or to read books to the blind. He said, "Maybe you're in the wrong profession and you should, instead of writing stories, you should follow them and become part of the change."
That's a little over simplistic in terms of my thought process at the time, but it was a pivotal conversation for me and looking at, "Okay, when I graduate with my degree, I would love to look for going into the Peace Corps or Foreign Service at the time I looked at," and that's when I got connected to Operation Smile and that was my first foray into global health and I fell in love with that work. It was so transformational, so clear the impact, such an incredible family who founded the organization, and just to see the power of what an individual family could grow, what a single idea like it was just being that close to the founders also and seeing that energy and momentum, I really just didn't turn back from that point and knew that was the career that I wanted to stay in.
This moment where you sort of walked away from a first love, which was writing, creative writing and reporting into being part of the story and shaping the story, was that a fairly emotionally just a simple step or was there some struggle at all in giving up something that you had a lot of fondness for? This dream of seeing yourself in writing mode, enjoying the process of writing and now seeing that to be less and less a part of your daily work.
I think there were a couple things. One, I took a class in my freshman year of college with Robert Thurman at Columbia on Indo-Tibetan Buddhism. The scope of that worldview and the depth of the teachings was pretty profound to me and in something called the Eightfold Path in Buddhism is a right livelihood and how do you live a life that is aligned with your highest values? I just started thinking actually a life in service of others in a more direct way. I think journalism can sometimes feel quite indirect. As a matter of fact, it's interesting because one of the founders of the End Fund, the original funders, read an article in the Financial Times, where they learned about neglected tropical diseases. We've stayed in touch with that journalist and he's like, it's the one. It's like one of the one stories I know that somebody read, somebody acted on, and amazing things happened because of. They definitely wouldn't have gotten into neglected tropical diseases if it wasn't for that one article and picking up the phone and calling the people who were quoted in that article and we've treated hundreds of millions of people later.
To be completely honest, I think between that course and then, I've always been a highly sensitive person and that has manifested in different ways in terms of emotionally just struggling sometimes. I think that honestly, the pursuit of writing, especially in that late teens, early 20s was really painful. There's like you or you finding your voice, you finding like what do you have to write about when you don't even have all this life experience? So I liked journalism, it was very clear what I was, but like the idea at the time wanting to write, be a novelist or something. I just like the discipline that it was required and all of the autobiographies of writers that I was reading were so tortured at the time. I almost could see myself just going down this somewhat tortured path in my mind.
I honestly think I was partly grappling with depression at that age and realizing a way out, a way of pulling yourself out of your own quicksand is to be of service to others and that really tangible clarity of, this child isn't going to get a cleft lip and palate surgery if I don't pull this team together, and the step by step of just being connected to a broader piece of the universe that your life is interconnected with those around you. It just felt like not going down the rabbit hole. What happened to me, it happens to many writers. In the isolation of writing, it can be really hard.
In my first role with Operation Smile, I found the sense of connection to community that I had never felt before, and a community of incredibly selfless people volunteering their time, taking off their vacations from work in order to provide children that they would never see again. There were just so many incredible donors, the whole community that made it happen, it felt like I found another part of myself and another energy for what is possible in life and how tangibly we can think about helping each other.
Sometimes that can get quite philosophical in terms of service to others. But I feel it's so interesting the things that I've done over the course of my life have been so tangible. It's like this child needs this surgery and how can we ensure that we provide it and provide training to the community of doctors to all be better at that? Or after a natural disaster when medical care is needed because there are so many injuries, you need to bring orthopedic surgeons or like medicines to people who otherwise would go blind and be disabled or the clarity of surgery. So I actually feel incredibly lucky to be able to think.
I've not only enjoyed the joy of service and community, but having this pick one problem and just working away at it. Because, I know that many people that I come into contact with get really paralyzed by the size of problems in the world, by the size of things that need to change. It's crushing when you can't carve out what piece is mine. What am I here to do? And what is in front of me that I can make a difference on? As you continue to work in your sphere of influence, it increases rather than just losing energy to where you actually aren't even making a difference.
Well, thank you for sharing that. It's very poignant, that struggle you mentioned that creative minds can have at times. I want to come back to that actually for a moment.
But, before we do that, I'm reminded of this little conversation that happened once between Abraham Lincoln and the senator when they were in a carriage going somewhere and Lincoln made the claim to the other gentleman that all human motivation ultimately comes from a certain selfish purpose to pursue your own happiness. Then at one point in their journey, Lincoln noticed, I think it was a little piglet who was getting caught in a swampy land and his mother was looking woefully at losing her little child to the marshy land. The piglet was sinking. Lincoln looked and said, "Stop. Stop this carriage." Then he goes out, and he saves the piglet and brings it back to its mother. Then he comes back to the carriage and then the senator looks at him and says, "Mr. Lincoln, you just proved me wrong, isn't it? Because look at it, your motivation came from being selfless, not selfish."
Lincoln said, "No, no, it came from being selfish, because I was going to be so unhappy if I allowed ourselves to keep driving force when this was happening around us. I did it for my happiness." I see you saying that. I see you talking about how you and this community of wonderful volunteers who are doing this beautiful work in helping cure the cleft lip and all of that. I mean, you're ultimately bringing a lot of joy back to yourself. If any or all of us can really experience that, live that and see that, my God, what a more beautiful world we can create knowing that there doesn't have to be a tension or a conflict between doing the right thing from a moral, ethical, social standpoint and also feeding one's own hunger.
I think it's about being willing to act on those impulses. Sometimes I see the action that people are taking is more complaining or just tweeting about terrible things happening in the world rather than "Okay, what can you tangibly do to make a difference?" But yeah, I think definitely, it has improved my happiness a lot to be in service to others. I think that some of the happiest people I know have figured out what's the role of service to others in their life. But also, there is something deep. I mean, I definitely remember when I was young, if I saw anybody abusing a dog or a child that felt like there was this roaring goddess. I would just scream or some part of me would come out just to defend that. Sometimes it wasn't even safe for me to be that bold. You don't know where those things come from to protect the vulnerable or step in to do something about injustice. There probably are people who sense that more sensitively than others.
I just watched Oppenheimer this week. Have you seen that film yet?
Yeah. I did too.
When he was young and the intellect of connecting a story about the universe and how to see things. There's one of his teachers saying, "It's not just about understanding, it's about hearing the music." I thought that's such a beautiful way to put it. He's hearing the music of physics in that case. What music are you hearing? What is your particular type of music?
Oh wow! How beautiful! Let's come back to the creative arts for a moment, the writing crafts, and for the writers amongst our listeners and the audience, I want to connect the dots a little bit between what you were saying there and then what you just said more recently, because I think there is a lesson there and I want to test it with you. It's part of an evolving thesis I have, which may be something that we could do to help advance the arts, and I'm just curious to see how you react to it. I could be way off or partially right or right? So, I got to test it with you.
What I noticed several years ago is how there were these shifts happening in the art world. There was a lot of focus on a certain form of self-expression, as though that was the highest pursuit of an artist was expressing whatever feelings and thoughts were deeply felt in you. Then, also what I noticed several years ago when my daughter was in middle school is that the books that were being prescribed and several of them had a very dystopian sort of quality as to the painful state of the world. It only gets from bad to worse and they're just a lot of evil among the powerful people in the world and that's it. It's a very sorry state of affairs. I was like, "Wait a second, isn't there a redemptive kind of end to this? Isn't there a questing that the hero makes towards something? Isn't there some kind of heroic end to this or something of that?" In some of these novels, there wasn't that and I could predict to you that time, the coming mental health crisis amongst teens that we are seeing today. Because, if you're going to just bombard your mind, just with dystopia, it doesn't have to be pollyannic, an unhinged form of utopian thinking when the world around you consists of a lot of pain and suffering. I think it does make sense to be grounded in the harsh realities. Then, what you did in the last part of your conversation is you provided us the connective tissue between redemptive possibilities and the pain of not seeing things go well in the world, which is to do something about it. Don't just see it around you. Don't just have a sensitive heart, but do something about it.
So my hypothesis is that, for somebody who is an aspiring writer, who wants to be a writer, who's seeing how tortured some of the souls were, people who were writers, perhaps the conclusion doesn't need to be necessarily that writing as a career, as a path is doomed to be torturous. But to ask yourself, who are the exemplars within the writing profession, who have had an intention behind their writing, that is not merely to express the pain they're feeling, etc., but to be of service to the world in some positive way, to find a way to lift human consciousness, to shape and help people direct their energies towards some positive action and to use the power of the pen to help people and all of that. I mean, at some level, I see Shakespeare as an example of that and Tennyson and some of the kind of poets from those ages. Anyway, what do you think of that?
I love it. Definitely. Why don't we go in cycles and chapters of different cultures, chapters of humanity, chapters of the world? I don't know if it's the novels being read in school as much as like the news that we turn on and reading about school shootings or the impact of climate change, can feel pretty dystopian and I think we have to curate our own inputs, because we need a lot of hope in order to lead us to action. That sense of hopelessness is what leads people to inaction and collapsing inside of yourself. If we are here to help co-create the world with each other, then having stories of hope sell more than stories of doom. For me, I feel like I'm surrounded by so many stories of hope. Probably, because I work with so many change makers and people who are practically doing such incredible things in the world. I think, "Wow! There is immense possibility for what the next chapter can be." Sometimes, it's just scaling back and looking at things from a much longer time horizon of what is possible.
We live in a time where there's so much less poverty in the world than there ever was. There's so much more access to opportunity, education and information. There's a downside of too much information, but actually the liberating capacity of that is so amazing as well that. I think you have to just find your own path.
For me, it was going to be a longer route, which is why maybe even having a co-author for my book was really helpful because then it was a collaborative endeavor. Writing a book ended up being about how I can tell the stories of people suffering from these diseases so that more people can take action? That was a different type of book than I would have written 20, 30 years ago. For some people, writing is the way that they heal themselves. That's the only way that they can think clearly is if they're writing and need to write it out to express themselves.
I mean, you touched on something that I'm extremely concerned about, especially as a mom of a teenage daughter, which is the mental health crisis that is going on in our world. I think part of it is how much weight they feel from seeing how many problems there are in the world and they're the generation that has to solve them. It's a different time. I love it if you think about how you can elevate whatever artistic endeavor that you're in to help create stories of hope, possibility and transformation.
I got that little spark from a thought that I had read from Gandhi. He said that, "To me, the only thing that qualifies as art is something that ultimately helps to advance human consciousness closer towards its divine identity. Anything different from that is not art to me, because it can only be beautiful if it's actually taking you closer to life." It's just an interesting idea, right?
It's a pretty purist view, though. It's also art as an expression of many facets of humanity, and of all of the different ways that human beings can be in the world, if it's to share darkness, that is part of being human also.
Well, this is an interesting thought and I'm just going to test it with you like my build on what you just said, which my thesis is that if you focus on darkness and then just stop there, then that's one kind of outcome that you'll get. Then if you focus on darkness and then move it from that shake up, wake up, opening of eyes and sensitizing yourself and the community to that and then move it from there into now what are we going to do about it? What I've just shared is what I've learned from cognitive behavior therapy from Dr. David Burns, who's a preeminent therapist and people have these automatic negative thoughts like "Nobody loves me," or "I'm terrible at work," or like "I'm not a good dancer" or whatever it might be. One of the breakthroughs that cognitive therapy helps people achieve is this thing that you don't shy away from honoring the uncomfortable truths in some of those dark aspects of what you're going through, but then you always end with that flourish of "Now what am I going to do about it?"
That's true.
So in some cases you challenge that because maybe your view of darkness is a much distorted view of the world. To an extent it's a true view of some aspect of the world, and that's what you've done. Because, you have this sensitive heart. You had it for all the injustices and pain you saw in the world, and you just directed your whole life towards it.
What moved you from those early forays into social service and humanitarian work to ultimately coming to the End Fund?
It was not some sketched out path. I think it's as many things in life happen, it's just you do the next best thing, you do the next thing that is on offer and I was very proactive certainly in looking for different opportunities. But I would have never guessed that the END Fund would have been created at the time. In that case, it was a recruiter who reached out to me and I already had a role at the END Fund and I wasn't looking for another job, but actually this was so compelling from the size of the problem that we would have a chance to tackle.
Part of my view of the world is a bit utilitarian in terms of how can you do the greatest good for the greatest number, that pragmatic utilitarian, and I'm also optimistic, but I'm also just, okay if there are solutions and interventions that can help people at scale, then that has to be done. Someone should do it.
I remember going to my first interview thinking, well, I don't think I'm very qualified for this job because I didn't study neglected tropical diseases and I haven't been a CEO before, but I was so obsessed with learning about these diseases and reading everything about them. I was so fascinated at the scale of the problem and how few people knew about them that I went with a whole list of notes of things that I thought whoever got the job might want to take forward. Like, this funding source and this conference and this and they sort of laughed. They were like, "Well, first of all, you were one of the only people who knew how to pronounce the diseases."
I think that that sense is probably my innate sense of, "Oh, that is a problem that should be solved," and my problem solving proactive nature just started on that path. Even though I had my own self-doubt, I mean a lot of people do have the sense of imposter syndrome or am I really ready for this? I was 39 when I became CEO of the End Fund. Am I too young? Whatever the story that I had in my mind was, then just to be like, "Well, if they want me to try it, then just try it. Then we'll build it." Luckily, I was the CEO of an idea at the beginning until we built it and hired more people and created an organization. This is my 12th year and I've just absolutely loved this journey. I met so many incredible people along the way and continue to learn and really just feel like part of a global community that is working on a common vision and roadmap to end these diseases. It just feels like a great meta collaboration on many levels.
Also, getting away from competition within a particular sector because there's so much competition in the NGO and nonprofit world and sometimes people that are working on the exact same thing can just clash. It felt like this is an under-resourced area with not enough people working on it and a huge desire for collaboration. The End Fund's model is a philanthropic collaborative. How can we mobilize more resources not just for our own view of how we're going to end neglected diseases, but how do we support whoever is best placed in whatever community to help move the whole agenda forward? So it's like all ships will rise if the sea rises. That has been really nice to just think because I think that the scale of collaborating to solve global problems is often not thought about like, who are the system entrepreneurs and what's the ecosystem of support between organizations not just siloed in organizations that needs to be developed. That whole field of system entrepreneurship and systems leadership has just fascinated me. I think that this community of folks working on neglected tropical diseases really exemplifies systems leader thinking.
Very cool. Let me make sure I understand you correctly. You have both programs that you design and execute on your own as the End Fund, and at the same time you're integrated with this ecosystem and helping support other organizations that provide channel, access and delivery or etc. to certain parts of the world to help alleviate these neglected diseases. Is that right?
We mostly don't implement programs ourselves. I would consider 80% of all of our funding goes to grant making to others. It is funding governments, funding local NGOs, funding academic partners and ensuring that there's collaboration and not overlap between those partners. That is a big emphasis on resource mobilization. But in order to raise funds, you also have to tell stories about this work, do advocacy. The more that we've grown in this space, we have a role of technical assistance. We have some incredible technical experts that support governments and partners. We do work on monitoring and evaluation. We do commissioning reports that fund the state of the sector, a lot of convening, so that we're bringing people together from different countries and different parts of these disease areas. Communications and really trying to do more on getting the financing right. So, working on health financing both from the private sector and the public sector. I think that it's sort of what are the key levers that are needed across the whole system? It's more resources, more convening, more thought, more research, we would end up supporting that as well as we would make grants to organizations. It's mostly to governments that have within their health systems that can deliver medicines, can provide care, and they're just incredibly resource constrained. That allows us to hold a systems view without having to also hire hundreds of thousands of community health workers to be in every village delivering, which wouldn't make sense anyway, because it should be those villages deciding themselves what's the best way of getting care out to their community.
What are some other aspects of society and the world where you feel this model is missing right now? And if it could be successfully implemented, it might make a significant difference in the way resources are coordinated, best practices are shared, and all of that? Because, it does sound to me like you're making a very important point. I always was intrigued about how when somebody is doing really good work in a certain arena, I feel like there are two stories playing out, and I want to test this with you.
One is, the story of what they're doing, but the other is the story of what is emulateable. What is something that they're doing, which is coming from that place of a universal truth that you were saying early in your life, you got very drawn to, what are those universals? I'm just thinking about the End Fund and this kind of system entrepreneurship that you're doing in social impact, what is the universal truth here that perhaps could benefit other parts of social impact work as well and beyond?
Well, I'd like to say like leave your ego and your logo behind and make collaboration a higher priority than organizational survival even. If your organization is not needed anymore because it's not needed in the ecosystem, be okay with that rather than just empire building, which can happen in the nonprofit world. Because, sometimes philanthropy can be de-linked to market forces. The other thing is just being really willing to support system catalysts who can take analytical looks at how all of the different actors work together.
What is that system map? People are so busy doing their thing in their organization, sometimes they don't have time to step back and have a system map view. There was one story I heard once that was like all the organizations in San Francisco got together and if they combined their budgets, they could keep every single homeless person in the Ritz-Carlton for the entire year. They're not solving homelessness. This has happened in a number of different cities working on homelessness. What are individual organizations, they're trying to be good at everything rather than like, what are you best at and lean in on that and the other one that's best at something, lean in on that and then the way that those services connect might actually have a greater impact than the way that the ecosystem is structured right now.
So I feel like there's many. I mean, I've been curious about this, back to our conversation about mental health and young people, especially in the United States, that I have visibility on. It seems very fractured. It seems very much based on what insurance you have? What gets covered? Who can make a livelihood in this work? Long waiting lists or you need to get services through schools and only if you can afford private services. There's so much that's burdened by the way the health system works and there's so much that's from a point of care when there's a crisis rather than what's creating resilience and what's preventing mental health crisis rather than just once you get to the most acute form?
I don't know what that solution would be, but I definitely feel like there needs to be some more system thinking around this issue. I'm pretty close to an organization called the Freedom Fund that works on ending modern day slavery and it's been really wonderful to see the impact that they've had. When they first started, sometimes they call human trafficking and modern day slavery like a data free zone because it's essentially crime. It's very hard to get accurate statistics about how many people are currently being trafficked or are currently living in conditions of slavery. There were two main bodies, the International Labour Organization and then an organization called Walk Free that were doing their own analysis of this and then putting out numbers of the global burden of slavery is X, and they were widely different. That wasn't helping with advocacy because people just got confused. So once they helped create a platform for those organizations to collaborate, it's like, "Okay, let's at least work on methodology together, let's work on common messaging." And so, there was much more collaboration at a global level, which helped unlock additional funding, and got more attention for that issue.
Then, the other thing, at a micro level, they would focus on hotspots of slavery, like the Nepal-India border, for example. There were tons of these like small Indian NGOs.
The story about the Nepal-India border was that there were small organizations working on the issue on both sides of the border, but they weren't talking to each other. So, people were having their children trafficked from Nepal into India and there were services there, but they didn't have anything on the prevention side. They weren't sharing information between organizations. So they might have one place where they're like, "Okay, the number of bonded laborers has gone down here, but it has actually gone up in the community next door so is that really an overall reduction of burden?" Just to fund a whole ecosystem of organizations and to fund the collaborative glue to bring them together and share best practices was really instrumental in helping to reduce that burden and to increase everything from resilience programming to litigation to policy change. I think there are a lot of issue areas like that from education to climate.
In the climate, I've seen the Climate Funders Network that's brought together funders who were previously everybody funding their own projects and how they thought things should be moving forward to like are we actually using the collective resources to best and highest use and how do we align funding or just really share information, share due diligence so that not everybody's doing due diligence on the same organizations ten times over. There are so many great ways to impact that.
Yeah, I'm so glad that this has come up in our conversation because I see this as a very thought provoking observation from you that I hope will be of enduring value to so many amongst our listeners who are very inspired and invested in their own causes. But sometimes, you don't see the forest from the trees and what you're really highlighting is that there's a whole other level that somebody needs to take stewardship and ownership over. I can easily imagine somebody like a Paul Hawken, for example, from the environmental movement would really celebrate the message you're delivering, because he's so zoomed out and he has such a capricious capacity to look across the whole thing, appreciate and empathize with the whole diverse set of positions and points of view and all of that as to what we need to do to help advance the environmental movement.
How is the United Nations, in your eyes, doing on this front to act as a body through which some of this kind of more collective coordination and systems thinking can be brought to bear?
I'm probably not the best one to ask. I think that the aspiration of the United Nations is so important, and I know it's the one entity we have for global coordination that's agreed on. There's such an urgency to make it work. Yet, it is kind of stuck in like a post-World War II, who has power on the Security Council. It's really tough, and it's one country, one vote. It just feels like every time that you are really trying to get big things done at the United Nations, it's so political and so bogged down and so complex. Also there has been so many scandals with peace keepers actually being forces of evil because of rape, spread of cholera and a lot. So it's such a big institution. It's almost like the elephant where you touch it in one place, you're blind and you don't know what it is. But I can say that my most interaction with the UN right now is the World Health Organization, and I am vastly hopeful about what WHO can accomplish. I know that they undergo a lot of criticism all the time, but a former head of the WHO told me people expect so much from the WHO, yet they have the budget of like a mid-size hospital in the U.K. but governments look to them, not necessarily the US, but most governments, especially developed countries, are looking to them for technical guidance, for recommendations about how to run health care systems. They can't have a disease expert in every single area. So they really rely on WHO and in the case of neglected tropical diseases, WHO helps to gather applications from countries on what drugs they need, they facilitate a multi-billion-dollar drug donation program every year to get medicines to places that are needed, which is incredible.
They are being hugely proactive in convening and thought leadership around how to move the NTD agenda forward. They helped get thousands of peace partners input to create what's now the NTD Global Roadmap to 2030. I just think from that technical, convening, authority perspective there, I mean, the only time that all ministers of health from around the world get together is the WHO Health Assembly to talk about health is not confined to borders, as we know very well now. I really feel like I have a lot of hope in WHO and then UNICEF, I've seen have tremendous impact. They certainly also have helped work with us on how we integrate deworming more into child health programs? How do you advocate for deworming being a part of a school health package so that it's not just the better curriculum that they need, but they need to be healthy when they're at school? I just see so many intelligent, thoughtful, well-educated, committed people working inside the UN system. Yet as any big system is, there are real challenges and they can just be incredibly political. So, I feel like certainly UN reform overall would probably be really helpful, yet I think it's difficult to achieve.
Yeah. Thank you.
What is your view on the UN? Have you collaborated much with the UN? It's so hard for me to say the UN, because to me it's like if you don't break it down into this piece that you understand or this piece that you collaborate with, it's making an overall judgment is hard.
Yeah, it is a multi-headed beast, isn't it? Like you said, on the one hand, we have to feel super thankful that this experiment that began after the Second World War actually has sustained itself, and for the most part, has provided a certain connective tissue on world issues that has also kept a little bit of a watch and a little bit of a care on how we really deal with each other as humanity across borders and all of that. I do have like my struggles with bureaucracy and politics and the need to maintain a certain purity of intent and a resolute executional focus, which I think as soon as organizations become that large, multi-dimensional with multiple stakeholders and all of that and decision making by committee and votes and all of that, it's just very hard to do some of life's best work. I guess a part of me is like just praying for it, but I also realize that behind that, like you said, lies a number of very deeply entrenched power structures. It's really a reflection of the nations, the sponsors and the leaders behind them. That's where the real change has to really be manifested.
I mean, how much can someone do just within the United Nations to make change happen if the leaders who are sponsoring and the nations who are behind it don't evolve themselves to?
It makes a lot of sense. I always wonder if we didn't have the UN, who would fill that purpose? I actually think that's why we need a UN to have some convening power and a place to have conversations that the world agrees is that forum to do it. It would be hard to rebuild that now at a time where so many countries are becoming more and more insular and isolationist, who would decide that kind of structure now, like the fact that it was even created is a miracle. Especially collaboration on things like climate, the environment more broadly global, it's amazing how many different accords on protection of the oceans like the UN is so pivotal to, but in many cases, the same with the World Health Organization is one actor of a whole ecosystem of governments, NGOs and academics. How do we all march together toward progress recognizing the UN can play a critical but one part of the role
Yeah. Like you just also so thoughtfully said, a deep appreciation for how in an imperfect world you still have an institution like that around. My one regret is that we have in the present moment in human consciousness, a mindset in institutions that they have to showcase themselves as though they are perfect, as though whatever position they're taking absolutely is the morally right one and is the right one. They cannot present a little bit more of a state of humility and a state of like let's have a unit within us that is constantly in a self-reflective mode about how we need to transform ourselves. What are our limitations and weaknesses in the context of where humanity is gone versus where we are today? Being very open about some of its struggles in that regard and taking steps towards moving themselves from here to a better institutional form tomorrow. That self-renewing, self-transforming aspect that we know is so critical for every family and human being. If we could create those structures as well as a much storied part of what an institution is, there is a department for that self-transformation that is constantly in that is perfectly fine to say that like we are a work in progress and we are not perfect. Because what I'm seeing is, I don't know if you would agree with this or not, I'm seeing humanity is moving at a faster pace than institutions are moving. Institutions are sometimes holding humanity back in some regards.
Well, you definitely see that right now about AI, many things related to the Internet. Institutions are so far behind where progress is going and like the idea of keeping up from an ethical perspective, from values, from regulatory perspective is hard to fathom. When you're explaining that I almost feel like you're suggesting literally a department of self-transformation, say, we were at Columbia University, and this group of people over there are going to think about our mistakes and how we can be transparent about it and maybe that would be one way of institutionalizing it. But I also think it's just a framework of leaders inside the organization that has to be so owned by everyone.
If you can demonstrate that in the context of your single classroom like I don't have it perfect. This is our curriculum for the semester. This is what we're planning for, but I don't have it perfect. It turns out we should turn a different way if you guys don't like this or this isn't going to be that useful, we can turn this work around. This is what I got. I built this based on the input from last year.
Yeah, there are lots of incentives to not share failure. How do we create incentives to share it so that we can learn? Sometimes that is happening more and more in pretty small settings.
It's hard when it comes to the public when it could affect your brand, it could affect your fundraising capacity, it could affect your shareholder value. People get very nervous about sharing too many failures. I think actually when people authentically share what they're not good at, even as an individual, that's when you perk up because you're like, "Oh, you also aren't perfect, great. We're all at humanity working, trying to make the world better from a very imperfect place that we are ourselves. We love this frame at the End Fund, everyone takes like a strength finder. Gallup started this years ago, here's your top strengths and you get them ranked, 1 through 32. The point is, everybody has strengths and how do you actually lean into what your strengths are and not put people in roles, where they really are going to fail at that or even within that role if they did a certain way, then they would thrive.
I definitely feel like we've had many discussions at team retreats about what the strength map profile looks like for your department, for this level of the organization, what's missing and how do we lean into it more. It's a way that feels safer than saying, what are your failures?
The founding head of programs for the End Fund used to always call it a commitment to reflective practice. That would be like taking time to have an after action report that was facing brutal facts like how did this really go? How could this have gone better? Let's just not celebrate it now that we're at the end. But do you have these cycles for review and continuous improvement when we're in an environment where it's easy just to rush ahead and get on to the next thing and then you end up repeating the same mistakes you had before. I definitely think we need to embrace it as institutions and as individuals more than just modeling that behavior.
Ellen, we're soon going to be having to wrap up. I want to be so grateful for the generosity of your spirit and time with us today. Before we have to though, I'd be really keen both for my own just joy and experiencing more of your life journey and for our listeners, if you could share a story of something that has brought you such a sense of fulfillment for all the sacrifice, the commitment and energy that you have been putting in year upon year into helping advance and serve the world, what is a story that your heart goes back to from time to time and gives you a great sense of reaffirmation and a rejuvenation of spirit, knowing that you were you were part of that story?
Oh, my goodness. There are so many. This was many years ago. There was a program set up that was birthed out of Operation Smile and one of our funders who became a dear friend. She particularly felt passionate about the kids that were not able to receive surgery that would come to screenings because their cases were just too complex. It required, not only just a simple cleft lip and palate surgery, but maybe neurosurgery, more complex anesthesia, more complex aftercare. In particular, there was a high rate in the Philippines of a type of encephalocele of the brain, and it'd be herniated brain tissue. The brain tissue would start coming out and between your eyes and nose and kind of destroy the nose, widen the eyes, you could have a tumor hanging off that would sometimes cover your eyes so that you couldn't see.
It might be like a pound, 3 pounds, 5 pounds until it could get very large. It was often children that had this. The stigma, the sense of self and not being allowed to go to school. So, we set up a program at the time and it was just sort of like my volunteer work on the side and it wasn't even like a core part of my main job, it was just to help set up this nonprofit that would bring these kids to Hawaii from the Philippines, receive surgery at Tripler Army Hospital, and then they would go stay on the big island. It was a collaboration with the Nature Conservancy, where she was also trying to protect indigenous native lands. Hawaii is a place with a lot of invasive species and how do you protect the pure Koa forest? It was like protecting the land and then also highlighting not only the surgery, neurosurgery and anesthesia that's needed, but all of the aftercare. You might have physically fixed this child, but what else could you do emotionally? So there were art therapists, swim with the dolphins, and animal therapy. I mean, all sorts of the most beautiful nature based compassionate therapy while they were there getting all of their follow up care which was 3 months
It was an incredibly intensive program that you could only do like a handful of kids per year because of how intensive it was. That project lasted like ten years. There were between 30 and 50 kids in total, something like that that was taken care of. I was very involved in the setup of it. The first year, I actually went to the Philippines to do the operations of our mission, got the medical charts for the kids with more complicated care, and took them back to Tripler. Anyway, they came and got surgery. One of the little girls was, maybe 8 at the time, Marianne. This was so long ago, like almost 20 years ago.
Recently, she found me on Facebook. That was the most unreal thing, because I don't even really check Facebook. I am not active on Facebook. But she found and was sending me these notes that were like "Just wanting you to know, I remember you from that time. My life has changed. I'm married now. I wanted to show you a picture of my first born baby. If I hadn't gotten that surgery when I was a kid, I would have never had this life." It was like she finished her education. She was beaming with happiness.
I think that was touching, because I think, oh, sometimes it's very overwhelming. Especially at the End Fund when the numbers are so large, we're over 100 million people we could treat. It can just seem abstract. Then when it's back to like, "Oh, Marianne, she had a very very different life because of the effort that I took and that others took to make this program happen."
We had a lot of criticism for that program because it was like, Oh, it's over. It's too expensive. It was impractical. It wasn't replicable. All these things that are like, well, it's not impractical for that one person. This is the passion that this group of people had and was able to live that out. It doesn't matter that the organization didn't live on in history forever. It was here to serve a beautiful cause and it changed and transformed not only her life, but the life of everybody who was able to be a part of that story. That's one of so many stories.
That's beautiful! Thank you for sharing. It was very heartwarming to hear. It's interesting because, now in the work you do in the End Fund, how many people are positively impacted by all of the organizations that you work with and serve? You must have some numbers around sort of on an annual basis or collectively over the last ten years, the number of people who have gotten the right inoculations and things.
I'll have to look at the most recent data, but we've delivered over 1 billion NTD treatments to almost 300 million people, but it's scaled over the years. Now it's over 100 million people per year in almost 30 countries. I just saw we've been able to provide over 80,000 surgeries as well. The surgeries are to stop blindness. One of the types of surgeries we do is like a $75 surgery, but when you have blinding trachoma, your eyelashes get infected, they start turning inwards and so it feels like every time you blink your eye, sandpaper is scratching across your eye. It is extremely painful and it will lead to irreversible blindness. But, there's a surgery that you can do that just kind of flips the eyelashes back, take medicine to stop the recurrence of that infection and not only does it stop the pain, but it stops the progression to blindness. So, you think tens of thousands of people are no longer at risk of being blind. Just this year, we're going to be providing more than 20,000 of those surgeries through our partners and supporting them.
Incredible! Last question for you. What's the source of your energy? I mean, for you to be exuding so much joy with the heaviness of heart that one must inevitably feel being embroiled and engaged with some of these struggles that still persist in humanity. We were just talking about that. What can that do to a writer? What can that do to an artist? Here you are. You're really actively invested in these issues. You're probably from time to time reading and studying and encountering these communities, just the way you describe the condition, for that one individual for whom, that was so challenging emotionally for one to face and take that. Where do you nourish yourself most?
Probably the same way you do, finding that nourishment inside yourself, creating space for rest, contemplation and that home within your own heart that is just deeply restful. Definitely having yoga and meditation practice for me is important. Spending time with friends, hiking, being in nature and I get energy from this work. It's not like I need energy from somewhere else to do the work, I get energy from this work because I love the people that I work with. The team at the END Fund is so smart and so inspiring. I learn something from them every day. I just feel the clarity of need and the clarity of what resources are needed. It's just like it needs to be done when there's an opportunity to communicate with potential funders or to lay out a plan to scale work, I just get a lot of energy from seeing it.
Now there have been dozens of countries who have reached disease elimination goals. There's been almost 50 years of efforts to eliminate river blindness in Africa. Just this year was the first year that Nigeria and Senegal were able to eliminate. Togo eliminated lymphatic filariasis. We're on the brink of eradicating Guinea Worm. In terms of seeing things like, "Wow, these are diseases that have been around for thousands of years that are referenced in the Bible, they are on our watch in this generation, with our support, we're lucky to be the ones that are here now to see this turn in history."
From diseases that in the US, for example, we used to have Trachoma and Hookworm in the American South and those diseases don't cause as much of a burden now, and everybody deserves to live a life free of preventable diseases. This is just about giving the opportunity to everyone rather than just the privileged few. It's part of the energy that comes when you love what you do.
So beautiful! You started a little bit with some of the inner kind of practices and then you moved into walks in nature and then you came back to your actual work itself as a source of energy. So inspiring. You talked about the Guinea Worm, and it is actually funny that you say that because as you were just talking, I was being reminded of Jimmy Carter. Whatever I know about our former president and how all through his life, until it seemed like his dying breath, he was just so deeply invested in wanting to be of service to humanity and manifest goodness. One of those has been around the elimination of the Guinea Worm in his Carter Center. You were reminding me of his energy and there you are.
Yeah. The Carter Center is a major partner of ours and an inspiration to me. I have a book signed on my bookshelf by Jimmy Carter thanking me for the work in this space. It's very meaningful to me, because he certainly set the pathway of saying just because the people are neglected and the diseases are neglected, it doesn't mean that people at the highest levels in the world stage shouldn't be talking about it and shouldn't be doing something about it. I feel like he's like a clarion call to action for all of us to work in this space.
I want you to have the last word. So, as we bring this to closure, do think if there is one thing that you as a message want to offer all our listeners as they go back, inspired by this conversation into their own lives and make the choices in the days and months ahead on how to fully manifest their purpose in advancing whatever it is that that is their calling.
As you think about that, let me just close out from my side with an offering for you. It's a small little story. One of the surgeons who was in my class shared the story. He was doing some work with Doctors Beyond Borders in Africa. It had to do with cleft surgery. There was this line of individuals who had come from here and from there and he said, at one point, there was this one individual that he was doing the surgery for, an adult. He had apparently walked a long distance to get there and to get this moment. He said, I think like this worker who was working with me, a local, probably saw that I was kind of like a little bit disengaged or this or something, in that moment after that surgery. So he comes up to me and he says, "Dr. So-and-so, you know, to the whole world this person that you just did the surgery for might be just one human being, but I want to let you know that to this one human being, you are the whole world. You know what you've just done."
Ellen, you and your team at the End Fund and all of these wonderful people you collaborate with, all that you have served and again worked with in past years, these other very noble organizations, each of these people that you have transformed like that individual who connected with you on Facebook, to them, you are the whole world. Today, you are that to us as well. So grateful for all you do.
Thank you. Well, thank you for what you have done by creating this platform. I just love this focus that you have on how we support true human flourishing, the connection between inner change and outer change. I think that so often these conversations are divided about what are we doing in our inner life and for our spiritual well-being and what are the bigger questions about why we're all here for our work life? If anything, I think you are shining a light on the universal truth that we are one. Life is all one and there's no difference. What you bring to your heart for one part of your life ends up spreading to the rest of your life. I think that we need so much more integration of these conversations. Thank you for creating the platform for that.
Thank you so much. So grateful.
Thank you.
