The following is a conversation between Ellen Agler, CEO of The END Fund and the Author of Under the Big Tree Extraordinary Stories from the Movement to End Neglected Tropical Diseases, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: Neglected tropical diseases, NTDs, affect over one billion of the world’s poorest people. More than 170,000 people die from them each year, and many more suffer from blindness, disability, disfigurement, cognitive impairment, and stunted growth. Yet, NTDs are treatable and preventable, and the annual cost of treatment is incredibly low. An organization that’s leading the effort to combat NTDs is The END Fund. It’s a pleasure to have with us tonight their CEO, Ellen Agler, who has just come out with a new book titled Under the Big Tree: Extraordinary Stories from the Movement to End Neglected Tropical Diseases. Good evening, Ellen, and welcome to The Business of Giving.
Ellen Agler
Ellen: It’s wonderful to be here. Thank you for having me.
Denver: Give us a snapshot of The END Fund and what you were created to do.
Ellen: The END Fund, what END stands for is ending neglected diseases. We were created to focus exclusively on that. We work on controlling and eliminating the five most prevalent neglected tropical diseases that as you said affect over a billion people.
I think since we started calling them neglected tropical diseases, they’re a little less neglected. There’s a little more funding for them. But still, I always think: it’s not the diseases that are neglected; it’s the people that are neglected.
Denver: The phrase “neglected tropical diseases” can stop you in your tracks. As you just said, it’s a billion people that are experiencing long-term suffering and disability. Why have they been neglected for so long?
Ellen: It’s interesting because the history of these diseases being called “neglected tropical diseases” is only about a decade old. Before, you had people advocating: Let’s do more to support schistosomiasis or lymphatic filariasis or onchocerciasis…. and as you can tell by the time I get to the third disease, no one can remember what the titles are or can barely pronounce them. So, a lot of folks working on these parasitic diseases – they have in common similar drug delivery; they are affecting the same population in terms of the poorest, most vulnerable people in developing countries. And oftentimes, their root cause is water and sanitation-related. Maybe we should call them neglected tropical diseases, and we’ll get further in our advocacy. For parasitologists, this was a good marketing play. But the thing is, the diseases aren’t neglected because you think: 1.5 billion people have them. Obviously, that’s not neglected. It’s not like they’re rare diseases. But they are neglected in terms of not as high on the global health agenda, and oftentimes, just not getting very much funding.
They traditionally have had under the Millennium Development Goals… they were called other diseases. They weren’t just getting the visibility, and I think since we started calling them neglected tropical diseases, they’re a little less neglected. There’s a little more funding for them. But still, I always think: it’s not the diseases that are neglected; it’s the people that are neglected.
Denver: Also, so much of the money goes to diseases which have a higher mortality rate. Isn’t that correct?
Ellen: Yes, it is true. It’s interesting though because you mentioned the 170,000 people die per year. Compared to one billion, that’s small. But actually, those numbers are mostly from the disease schistosomiasis. This makes it the second biggest killer in terms of parasitic disease after malaria. So, it’s not small but it’s mostly linked to disability and illness and anemia, and just not thriving and being ostracized. So, I think it’s true that a lot of the time, we’ve been focusing on what helped people survive but not necessarily also thrive, and these are diseases about reducing visibility.
…if I could help bring some of these stories forward, maybe it would help reduce the neglect of the attention and awareness about these diseases, and hopefully, I think what I was inspired by when I started this work was: How do you solve a problem that affects a billion people?
Denver: Absolutely right. What was the end objective, Ellen, you had in mind when you set out to write Under the Tree?
Ellen: One of the things, when I became CEO of The END Fund in 2012, and I was in this process of reading everything about neglected tropical diseases. I’ve not been in public health for a long time but … I’m not an expert in these diseases. And I found that everything written was academic, peer review journal. There was very little out there that just told the stories of people’s lives who were suffering from the diseases. And the more that I met people in the field, I just got so inspired by the scientists who were inventing medicines, who years later won a Nobel Prize. Or the woman who is in her 90s now who came up with the word “river blindness,” and she’s still out there as a public health advocate; or people who’d overcome the diseases, that had been ostracized that are now in their community helping others get treatment. And I just thought: if I could help bring some of these stories forward, maybe it would help reduce the neglect of the attention and awareness about these diseases, and hopefully, I think what I was inspired by when I started this work was: How do you solve a problem that affects a billion people? How do you even get your head around that? And it really takes a lot of different actors. So, I wanted to show: what is that from the government perspective, the philanthropy perspective, the local community health worker perspective? … and just take that snapshot of what the system is to tackle a really big problem and what kind of collaboration it takes.
Denver: As you say with these diseases, it’s just another way to lower the barrier by telling stories as opposed to this academia– between the names and the academic journals, it’s hard to get access to.
Speaking of 2012, the collective movement, if you will, really crystalized then with the London Declaration on neglected diseases. Who are the key players behind that declaration, and what was declared?
Ellen: That was a really great moment, I think, for neglected tropical diseases, where a lot of these key players came together– donors, governments, implementing partners that were doing work on the ground and said, “We want to put a stake in the ground.” Pharma companies increased their donations. Right now, the five diseases that The END Fund works on – all of the medicines are donated for as long as it takes to control or limit those diseases. That was a huge declaration. A lot of drug donation programs have been taking place for a while, but this has really stepped that up. And also, it was a commitment of new funding.
USAID and DFID, the UK and US bilateral funding agencies, increased their funding, which really helped bring in philanthropists. Also at that time, there were very few countries that had a national plan to tackle neglected tropical diseases. That just kicked off a movement where country after country, you see now having a national plan that they’ve designed to tackle these diseases. So, it really was a… it wasn’t that that was the beginning because there’s been work taking place for many decades before that on neglected diseases, but it it just really took it, I think, to the next level in terms of this.
Denver: Let’s discuss a few of these diseases. You mentioned a moment ago, river blindness. How did that treatment come about, and what was the role that Merck played in it?
Ellen: It’s interesting. I think a lot of these diseases are ancient diseases. They’ve been around for thousands of years. Egyptian tombs, you see trachoma. With river blindness, it is a parasite that lives in a small black fly that only is around fast flowing rivers. You would used to find places in West Africa decades ago where they would call it the Valley of the Blind or the River of the Blind because half of the population would become blinded by these diseases, and you could just get so much of this parasite in your system; it would cause blindness and also this really painful, scratchy itch all the time; the people would just suffer so much from that. Actually, river blindness was the first health program that the World Bank ever took on after Robert McNamara – that was under his leadership.
Those early days, it was actually treated by helicopters spraying insecticide. It was like a billion dollar program. Then, finally, Merck developed Ivermectin. William Campbell was the scientist leading that work at that time who won a Nobel Prize back in 2015 for his work. That revolutionized things. You didn’t have to just treat killing the flies. You could treat people consecutively over a number of years, so what you see with river blindness now is that there’s very little blindness left. There’s still some of the itching disease, but you need to treat it sometimes for up to 17 years. But there are pockets, especially in South Sudan, where it is still causing blindness.
But the goal now has gone from not just controlling the disease but to eliminating transmission. And that now is taking place in most of Latin America – the disease has been eliminated, and we’re launching too working on Africa, which is a tougher, tougher spot, but certainly caused a lot of suffering for many, many years. That’s really turning the tide. I’d say of all the NTDs, river blindness was the pioneer.
Denver: For those who advocate for effective altruism, and that’s a movement of getting the most bang for your charitable buck, deworming, especially in the schools, is right at the top of the list every single years. Tell us about this and the impact that it’s had.
Ellen: It’s interesting because I’m so glad that the effective altruism community has looked at this and they are so stringent at the data that they look at, and they want to see what has been, from randomized controlled trials compared to other interventions, and I think what a lot of the studies have shown is that deworming not only has a great bang for your buck with health, but also that it reduces school absenteeism significantly by up to 30%. And on these longitudinal studies, it’s been shown that people earn more money as adults if they’ve been dewormed as a child.
So, it’s got these knock-on effects from economic, health, education that is really a lever for development. You see that kids that are dewormed and communities that are dewormed are just thriving compared to the ones that aren’t. In the last 10 years, when you think about the progress of the NTD movement, 10 years ago, it was only about one in five kids were getting access to deworming treatment, and now it’s 7 out of every 10 school-aged children. So, yeah, it can be anywhere from 25 to 50 cents per child to get them dewormed. Remarkably, you think about the cost of your latte, you can deworm five or six kids.
Denver: I do want to ask you about this one because I didn’t want to have to say it, but I will. And that’s schistosomiasis. That’s the second biggest killer among tropical diseases. How do you get that? What are the symptoms? And what’s the treatment?
Ellen: You can also just call it schisto or “snail fever.” Schistosomiasis is a parasite that lives in a freshwater snail. What you find is, people who are around water, in water; and I always think of it as quite tough because it’s a disease that children will get just by being kids – swimming and playing in their local rivers, or people who have livelihoods that they need to be around the water like fisherman, or people who are washing cars at the side of lakes end up getting exposed to a high burden of this disease, and it can get in your liver and honestly, live and breathe there for decades before you notice it’s such a bad problem. It just causes a massive amount of illness and death.
Denver: What do you do to treat it?
Ellen: You treat it with praziquantel which another company, Merck Serono, donates. Also, you do a lot of what – the focus also with NTDs is prevention education. So, if you are – basic hygiene using a latrine, washing your hands, you can prevent a lot of these diseases from cycling.
Denver: I remember from my days working on the restoration of the Statue of Liberty and Ellis Island, that the number one reason that was given for immigrants being turned away and sent back across the Atlantic was trachoma. What is trachoma, and how do you treat it?
Ellen: Trachoma is a bacterial disease, and it is so interesting that you remember that from Ellis Island. I think it’s true not only for trachoma, but things like hookworm; we had them in this country. We had them in the United States. A hundred years ago, this was very common. This is a disease that causes a bacterial infection of the eye, and what happens over time if you have this infection multiple times is your eyelash turns inward. So, every time you blink, it feels like sand scraping across your eyes. It’s so painful and eventually caused permanent, irreversible blindness. It can be passed from mother to child, from villager to villager.
Very much the strategy for trachoma is an acronym called SAFE. If you get that, your eyelash turning in, you can do surgery to correct that; A for antibiotics. Pfizer donates Zithromax, so that you can treat entire communities that have a high prevalence of this disease. Facial cleanliness, just actually just keeping your eyes and face clean helps a lot; and environmental improvement which is around latrines and keeping your environment clean. It’s remarkable because even in the last few years, you’ve seen many countries come forth to declare the elimination of trachoma, and that has, with a lot of additional support and people rallying around trachoma, I really believe in the next 10 years, we may have very few spots in the world that have trachoma. After being around for thousands of years, and as we said, you could find pictures of people with trachoma in the Egyptian tombs, then to Ellis Island being such a thing; it’s incredible to think in our lifetime in such a short order, we may not have some of these diseases.
Denver: That’s very exciting. With the pharmaceutical companies stepping up the way they have and donating this medicine, it would seem to me then the real key is the distribution of the medicine. How is that done? Who does it? And what are some of the bottlenecks you run into?
Ellen: The way it works with the distribution of medicines for these diseases is: you map the prevalence, and then you treat everybody at risk in a certain area. So, you’re not necessarily testing every single child for worms. Okay, we recognize there’s 25% or sometimes it’s 80% of kids have schistosomiasis or 25%. Deworming is really, really safe. Let’s give it to everybody in this community. The way that’s done is often through schools. For children, bringing everyone together, deworming them through schools, or through community health workers that sometimes go door to door or work through clinics. It’s really this amazing army of frontline health workers and teachers that we’ve been working with – hundreds of thousands of those health workers. So, you need to get drugs into the country, distribute them to the regional, then down to the district level. I always say, neglected tropical diseases is as much of a logistical exercise as anything because the whole community, all of those organizations that signed the London Declaration back in 2012 collectively, and all the governments that are committed to distributing medicines delivered over one billion treatments last year. It really is quite remarkable to see the great impact.
We’ve been treating river blindness and schistosomiasis in Yemen even with the conflict going on, and the local team is so committed and so focused on getting this right and getting this done. Even in places I think people think you can’t get anything done, actually, you can get stuff done.
Denver: Let’s speak about governments a little bit. Give us an example of a nation that has really taken this on in a very conscientious and aggressive fashion, and maybe one which is filled with more challenges.
Ellen: The predecessor project before The END Fund got started was in Rwanda, and there’s a philanthropist that said, “Let’s do a pilot program. We can do integrated NTD treatment. Rwanda had high burden of intestinal worms and schistosomiasis. And at that time when that got started in 2007, the diseases hadn’t even been mapped. There was no government program. Some of the places, they found schools where 80% of the kids had high burden of these diseases. And if you think about round worms, each worm is 8 to 12 inches long. A child with a moderate infection could have 200 worms. It’s a serious problem. And if you get dewormed once or twice a year, you just never get that bad of an infection, even if a few worms resurge.
There is an NGO that went in and supported the government. So, they had a bigger group of expats and folks from the region and technical experts that supported the government at the beginning, and over time, that decreased until the government was running the whole program all on their own. They still needed some external financing. Just this year, Rwanda announced that they are fully taking on board financing and managing the entire project on their own. That was a process over a number of years, but they imbedded it within the health system. They trained the 40,000 community health workers. You can go to labs, and the technicians know how to test and treat for worms. That’s just a regular part of school health days once or twice a year. So, that’s exciting.
I think that’s the holy grail of a lot of development programs is: how do you really get to sustainability, especially if the diseases aren’t eradicated like we hope polio or guinea worm will be. They need to have some maintenance of these programs. Kids might not be sick, but you still have an infection, have a resurge once in a while. That is great. I think the challenging places are, Rwanda’s a small country. If you look at Nigeria or Ethiopia; Ethiopia has a population of 90 million people; 70 million have one or more of these neglected tropical diseases. Nigeria, two out of every three Nigerians have one or more of these diseases. It’s a federal country, so it’s almost like every different state is managed differently. Then there’s also places where conflict – we have worked in South Sudan. We worked in the Central African Republic, Somalia, we do actually get work done. Matter of fact, one of the places that inspires me the most right now is Yemen. We’ve been treating river blindness and schistosomiasis in Yemen even with the conflict going on, and the local team is so committed and so focused on getting this right and getting this done. Even in places I think people think you can’t get anything done, actually, you can get stuff done. But it’s more of a challenge, for sure.
Denver: Does climate change have any impact on tropical diseases?
Ellen: Absolutely. The mosquitoes are moving north. Al Gore gave us a talk, and he always puts up a slide about neglected tropical diseases because it’s not just the ones we’re talking about. But also dengue and chikungunya. It’s a concern because it changes the map of where these diseases are, and we’ve seen them now coming across the border into Texas. There were some— south of France had some cases of schistosomiasis. One thinks these are countries… these are things only in Africa. But really they are also diseases that we have to be careful don’t resurge. Also it’s not just climate change, but things like the underlying economic and social infrastructure. We’ve seen in the American South actually hookworms starting to resurge in places that don’t have good sewage and water and sanitation systems. We have to, I think, be vigilant everywhere when it comes to these diseases.
It’s not just from a health perspective, but what really, what could you unleash in terms of human potential just by people not being so anemic and not able to go to work or not able to go to school?
Denver: Ellen, is there economic data on these diseases on how much could be saved or what the increased productivity could be if they were eliminated?
Ellen: There was a great study that Erasmus University did looking at the London Declaration Goals, what could be saved. Just for Africa, they estimated $52 billion in additional economic gains could be earned if we controlled and eliminated these diseases by 2020. I think it was, the number is $600 billion globally. It is significant. I think that’s what is important to think about. It’s not just from a health perspective, but what really, what could you unleash in terms of human potential just by people not being so anemic and not able to go to work or not able to go to school?
It’s actually, when you look at the Rockefeller Foundation starting in the American South. It was all around eradicating hookworm. It was the Rockefeller commission to eradicate hookworm. Apparently, John D. Rockefeller sent an economic commission down to the south first before starting the hookworm project, and they wanted to do more in agriculture and said, “Everybody looks sick there.” Most of the places where they were, they were unfortunately calling it laziness disease. It turned out it wasn’t laziness. It was anemia. There was widespread anemia from hookworm, and until they were able to address anemia, they weren’t going to be able to have that kind of economic productivity. I think there’s a real link between health and how we do more broadly in society.
Ellen Agler and Denver Frederick inside the studio
Denver: What role does technology – smart phones and things like that – play in this effort?
Ellen: It’s amazing how…there are such great smart phones and apps and digital platforms used to collect data to do mapping. Also, a lot of just trying to have an open source platform for who’s doing what where. There’s this great website called ”This Wormy World, The Trachoma Atlas” if you want to get on, get really granular about what are the diseases and who is being treated and what are the gaps. And I think that’s great because I think in terms of a community this large.
I got that nickname “worm lady.” I’m embracing it as a badge of honor. My friend’s son gave me that nickname, and it seemed to have stuck. You’re lucky I didn’t bring today my big jar of worms that I sometimes bring to talks.
I do think that systems level view is something that we need now. How do organizations work together? What are those intersection points? How do you foster collaboration? How do you decide what not to do as an organization because you know someone else is better at it? And I think having that walls down, managed ego, put your logos aside – how do we get together around a common cause for a common goal?
Denver: The END Fund was created with a systems view and you could accurately be described as a systems entrepreneur. How does that differ from a social entrepreneur? And what different skill sets are needed?
Ellen: Well I think about looking at something from a systems view as the founders of The END Fund thought there are many great organizations, whether it’s the Carter Center or Sightsavers or Helen Keller, or small local nonprofits that might just work in one country that are doing good work, governments that are doing different work. How do we make sure we’re not duplicating efforts. The idea of spending time mapping the whole ecosystem – who is doing what where? How can you help make some organizations more efficient or just support them with additional funding? Or how do you see – okay, there’s a big gap here. Nothing’s happening. How do we intervene there? How do we support local partners? A lot of the folks who founded The END Fund came from the financial world. So when then thought” fund,” they’re like, “That means we’re going to support a portfolio of programs?” Lots of different organizations to help all for the boats to rise and really keep our eye at that system level.
And I think that system entrepreneur has certainly come into trend as a phrase that I like. I think… I’m not sure it has to be system versus social entrepreneur. But I do think that systems level view is something that we need now. How do organizations work together? What are those intersection points? How do you foster collaboration? How do you decide what not to do as an organization because you know someone else is better at it? And I think having that walls down, managed ego, put your logos aside – how do we get together around a common cause for a common goal? I see that happening really, really well in the neglected tropical disease community, and I think that there are lessons to learn about just having common goals and many organizations.
…how do we make sure in these places with limited resources that you’re really maximizing time and voice?
Denver: What are some of those lessons?… because you’re absolutely right. You have power dynamics; you have different world views. You have all these things going, and you mentioned there with the egos and the logos, everybody looking to promote their own organization, if not themselves – how do you somehow suppress that and sit at the table with everybody else and have that trust and begin to move ahead?
Ellen: Sometimes I think there’s a view that you need. You sit in your specific organization, and so you see things through your organizational lens. But actually, the government doesn’t want to see it that way. So, for us with The END Fund, we thought: “ Okay, we can engage a lot of new private philanthropists to join the neglected tropical disease cause, but what if we had 30 new private philanthropy foundations going to meet with the minister of health in Rwanda? That’s just going to be an extra burden for them. So, why don’t we ourselves, together co-fund, and then go as one collective voice to negotiate?
We’ll all go together. I think part of it is, who is your audience? The audience is the beneficiaries. Your audience might be a government you’re working with. Or your audience is the World Health Organization, and there is a great example. All these people want to hear: What does the whole disease community want? They don’t want to hear from a hundred different organizations. So, the more I think… how do we make sure in these places with limited resources that you’re really maximizing time and voice?
I saw this happen with trachoma where all the trachoma organizations got together and created this assessment of what is the global trachoma burden. Where are the gaps? And what is the cost going to be? They started something called the International Coalition for Trachoma Control. That wasn’t even an organization. They just put a logo on the front, all their individual logos on the back, and that is what sold Queen Elizabeth Diamond Jubilee Trust and the UK government to put a bunch more money into trachoma. They said, these partners know how to play well together in their sandbox. It resonates.
Denver: It resonates so much that you’ve been able to get a pretty good deal of unrestricted funding, correct?
Ellen: We have. It’s a mix. I think we have some unrestricted, some restricted. It’s interesting, even the restricted funds that we get though, some of it is to cover our overhead because people see, they love this fund model, and they want to see how can we onboard new people in a way that really promotes collaboration and coordination. So, there are investors in The END Fund that just say,” I want to be an unrestricted investor. I can be a part of everything in the portfolio. You’re supporting dozens of organizations in dozens of countries, doing really innovative work.” But sometimes we also get people to say, “ I really love Zimbabwe. I just want to do something in Zimbabwe,” and I think what we’ve said is: “We want to be able to easily engage people in the sector and do so in a way that every dollar goes the furthest, and if we have ways to onboard. Ideal is unrestricted, of course, but then, I think we also don’t want to turn people away if they have specific passions, and there’s a need. We have turned some funding away where we’re like, “That’s not really a need, or that’s not a match with what the countries need.”
Denver: When you talked about how The END Fund got started, a lot of people from the financial industry and western philanthropists, as you have evolved, have you been able to get others involved at a very high level from the places where this work is being done?
Ellen: Yes, actually. What I love about The END Fund’s board, we do have a very international board. Even from the beginning, some of our founders are based in Dubai. We have UK, US. But I knew from day one of starting with The END Fund that I really was hoping to get; if we’re working in Africa, can we get African investors to support this work and be a voice? Now, we have a Nigerian board member who runs one of the largest private equity funds focused on Africa. In Zimbabwe, a philanthropist who is a great activist and advocate, and she does a lot of work.
It’s not only putting dollars. It’s really about using voice, making introductions, and I think that that’s helped a lot because it has been just corporate leaders and civil society locally that have really stepped up. We do a lot more, sometimes funding governments directly, funding a Nigerian NGO, a Congolese NGO, and by having more people from the countries that are represented even on our board and our technical advisory group, this helps a lot.
Denver: You began your career as a journalist, Ellen. Where did the turn occur that got you into the field of international development and humanitarian causes?
Ellen: I had an editor who would send me out; I love my career in journalism – that’s probably why I came back to write this book, too, because I love interviewing and going deep in stories; but I think I’ve always been attracted to having an impact. It must have been something when I was in journalism that I got attached to things because I would end up doing a story about the Commission for the Blind is going bankrupt, and then I would volunteer to read books for the blind… or a refugee resettlement, and then I would volunteer for it. I had an editor who was like, “I think you’re in the wrong field. Maybe you need to look at… you’re getting way too attached to the stories that I send you on.” And I thought at that time, “Oh maybe I’ll go into the Peace Corps for a couple of years. Maybe I’ll do something.” And actually, I got introduced to the organization Operation Smile then and ended up spending two years with them, thinking I would come back to journalism. And it just transformed my world view and sense of what I wanted to do. And so here I am almost 25 years later working in global health, and I love it!
Denver: Describe the corporate culture at The END Fund and what you do…and you’re a bit of a broker between philanthropists and the actual work being done on the ground. How is that reflected in the workplace culture of The END Fund?
Ellen: I think The END Fund is a small team. We’re about 35 people now, and with a big impact because we do support so many partners. Last year, our work was able to translate into 100 million people getting treatment in more than 25 countries. So, I think that that sense of… and it was started, the DNA is very much from the private sector. So, it just started with a real scrappy impact, but focused: How do you go get the most out of your dollar?
Also, we did this great survey amongst our staff recently, and there was 100% of people feeling that they were just really mission-aligned with what they were doing. Also, they really appreciate the flexibility of the work culture. I think we have people traveling around the world and partners everywhere. And I think that there’s still that sense of: we’re only six years old, so it’s still a young enough organization; it’s been a fast growth every year. We’ve still really got a lot, just a lot of energy and innovation. We’re doing more on just having team retreats, figuring out ways to have balance. I think we’re all trying to figure that out. We have had very little turnover. People I think get in this work, and they just love it. And it’s a real mix of people from the fundraising and marketing to disease experts. Quite a global community! People that have lived all around the world. We are headquartered here in New York, but since we have projects everywhere, a lot of us are on the road a lot.
Denver: It’s funny with those fast-growing organizations too is that people never get stuck in a job because new jobs are almost being created all the time because new opportunities have come up.
Ellen: I know. I started as the CEO. I was the first full-time hire of The END Fund, so I was employee number one. I think, I’ve had the same title these last six years, but it has been a completely different job every year because of the different partners that we’re bringing on board, the new places that we’re working. It’s been great. But I think you have to be a sort of fast-paced, constantly evolving startup culture to do well.
…End is always the difference between control versus eliminate versus eradicate – go down a rabbit hole of definitions. I think End to me, you have to define End broadly as these diseases are no longer a public health problem. The people are no longer vastly ill, and even if they do need treatment, they have access to treatment. Because some of these aren’t going to be completely eradicated.
…this should be the last generation where you see people with elephantiasis. We have access to that kind of treatment; that’s just diseases no one should have to live with.
Denver: Let me close with this Ellen. You map all this work; you know where we stand now, and you have a pretty good idea where this movement is headed in the future. How close or how far do you believe we are from the end, the end of neglected tropical diseases?
Ellen: I could give you a very technical answer because End is always the difference between control versus eliminate versus eradicate – go down a rabbit hole of definitions. I think End to me, you have to define End broadly as these diseases are no longer a public health problem. The people are no longer vastly ill, and even if they do need treatment, they have access to treatment. Because some of these aren’t going to be completely eradicated. But what we’re seeing now is, even when I started at The END Fund six years ago, the number was more – it was closer to 1.8 billion people that were at risk. Now that number is below 1.5. Even in that time, 300 million people no longer need treatment for some of these diseases. And we’ve modeled out what will this look like if we stay on track between now and 2030.
We think by 2030, that number could be closer to 200 million people globally. So, it’s over a billion people that could be really over the next… it’s remarkable, and I think that that is unprecedented in human history that this could happen now. We work a lot with the Gates Foundation who feels like these diseases are the ones that are going be able to be ended before malaria. That one’s going a little bit further out. I have a mass amount of optimism because I’ve seen it in country after country, these diseases come under control, and people aren’t going blind as much from river blindness. This should be the last generation where you see people with elephantiasis. We have access to that kind of treatment; that’s just diseases no one should have to live with.
Denver: There’s not a lot of good news out there. This has to be one of the big-time good news stories. Ellen Agler, the CEO of The END Fund. I want to thank you so much for being here this evening. The book again is, Under the Tree: Extraordinary Stories from The Movement to End Tropical Diseases. Where can people go to find out more about The END Fund and more about this book?
Ellen: I would suggest going to our website at end.org. It has all the information you would need on The END Fund and also the book.
Denver: Fantastic. Thanks, Ellen. It was a real pleasure to have you on the show.
Ellen: Thank you. This was wonderful.
Denver: I’ll be back with more of The Business of Giving right after this.
Ellen Agler and Denver Frederick
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