The following is a conversation between Dr. Frank Richards, the Director of the River Blindness Elimination Program at The Carter Center, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: And our semi-finalist for this evening in the MacArthur Foundation’s 100&Change Initiative is The Carter Center, and their proposal is to eliminate river blindness in Nigeria. And here to discuss that with us is Dr. Frank Richards, who is the Director of the River Blindness Elimination Program at The Carter Center. Good evening, Dr. Richards, and welcome to The Business of Giving!
Frank: Good evening! It’s a pleasure to be here.
River blindness is an infectious disease, and it’s caused by a parasite. Actually, it’s caused by a parasitic worm…it’s also a very terrible skin disease, as well as a terrible eye disease.
Denver: Quite a few people have probably heard of river blindness, but not too many people fully appreciate or understand what it actually is. So tell us – what is river blindness?
Frank: River blindness is an infectious disease, and it’s caused by a parasite. Actually, it’s caused by a parasitic worm. You can imagine a very thin worm that measures about 13 inches long, coiled up into a clump, living underneath your skin. That is this parasite that we call onchocerca volvulus that causes river blindness. The interesting thing about this parasite is that it is transmitted from person to person by the bite of a small black fly. The black flies breed in rapidly flowing waters, rapidly flowing rivers and streams. So when you’re close to those streams, you’d find lots of these black flies, and so you find lots of these worms.
…people catch river blindness, but people also cause river blindness. So that if we can use the tools that we have, this miracle medicine Mectizan to eliminate the parasite in the human population, it’s gone once and for all, unless it’s reintroduced from outside.
Frank: I think it’s really important to recognize that these black flies are not born infected with this parasite. The parasite doesn’t live in the rivers; it doesn’t live in other animals or in the environment. This is a parasite that lives in human beings only, and the black flies serve to pick up the parasite and transfer it to another person. So the black flies are not infected; new infections cannot happen, but the black flies must be infected by another person. So I like to say people catch river blindness, but people also cause river blindness. So that if we can use the tools that we have, this miracle medicine Mectizan to eliminate the parasite in the human population, it’s gone once and for all, unless it’s reintroduced from outside.
The way that the worms cause blindness is that the curled up clump of worms living under the skin that I mentioned produce baby worms, which we call microfilariae, that get underneath the skin and also get into the eyes. These tiny little worms, about the size of a period on a printed page of paper, get into the eyes and cause inflammation and visual loss and in many people, ultimately blindness. It also gets under the skin and causes terrible, terrible itching and skin discoloration and depigmentation of the skin, and so it’s also a very terrible skin disease, as well as a terrible eye disease.
Denver: Boy, it certainly sounds horrific. How long is it before somebody would go blind?
Frank: Generally speaking, in the worst areas, people begin to lose their vision when they’re about 18- or 19 years old, so it’s a slow process. In some communities, when you start getting into the 30s, the fourth decade or so, you can see 15-, 20-, 30% of people blinded.
Denver: Oh, wow! What are some of the repercussions of river blindness to the family, to the community, to the economy of places like Nigeria and other places in Africa?
Frank: First of all, it’s not hard to imagine the economic catastrophe of having a breadwinner in the family being blinded, especially in these communities that are most affected… which are really totally economically on the borderline. We’re talking about poor villages. We’re talking about people who work farms, small plots of land, basically out-of-the-cash economy. If people are unable to work, then they’re not able to eat; there’s no social safety net. So this is a really terrible issue.
In addition, an important point here is the intergenerational impact. What you see—and as a matter of fact, the symbol of river blindness– sort of the iconic photograph– is a small child leading her blinded father to the fields. You look at the child and recognize a role reversal. Rather than the father taking care of her, she is now spending her time taking care of him. And the opportunities lost for improvement in children’s social position… meaning education and opportunities… are lost. So those repercussions are very important.
The third point I’d like to make is that in addition to the blindness, the skin disease that I mentioned causes discoloration and terrible itching. Actually, the discoloration of the skin puts people in the position of being stigmatized and less able to marry, be they men or women. So on a host of different levels, you see these challenges that emerge from this condition that we call river blindness.
The estimates are that of the 130 million people at risk, probably about 40% of those are actually infected…but that will really depend on where you go. In some of the most afflicted areas, 100% of people have the parasite infection.
Denver: You become a social outcast. Well, taking Africa for the moment, how many people are threatened by river blindness there? And how many people do you estimate are carrying the parasite now?
Frank: Africa is the continent most afflicted by this parasite. Ninety-nine percent of the cases of river blindness occur in Africa, and a small number occur in the Americas and in Yemen. So Africa is the main challenge. It’s estimated that about 130 million people live at risk of acquiring this infection, but nobody is really sure how many people are actually infected. The estimates are that of the 130 million people at risk, probably about 40% of those are actually infected…but that will really depend on where you go. In some of the most afflicted areas, 100% of people have the parasite infection.
Denver: These are huge numbers. Well, let’s talk about some ways to prevent the transmission and spread of this disease. What tools are available?
Frank: Well, it’s interesting to bring my own experience into answering that question. Because when I first started, I was an epidemiologist at the Centers for Disease Control in Atlanta, assigned to answer phone calls for people in the United States who happened to have river blindness. Those were usually missionaries or African students, people who had acquired the infection in their home countries because, of course, this parasite is not transmitted in the United States. At that time, 1982, 1983, answering those phone calls, I had to tell physicians or the patients, there was no treatment whatsoever for that condition.
It was untreatable in 1982. Then the discovery of the medicine Ivermectin by the company Merck, and its development for use in river blindness, was just a sea change. In 1987, this medicine was donated by Merck under the brand name Mectizan… as much as necessary, as long as necessary to control river blindness. The medicine is a safe and effective tablet that can be given once, twice, or four times per year in mass treatment programs– where you treat everybody in the community, and it’s effective at killing the microfilarial stage that I mentioned, the baby worm stage that gets into the eyes, gets into the skin and causes itching and causes eye disease. Now, it’s not the perfect tool, and since it doesn’t kill the adult worms that I mentioned – the thin worms that are about 13 inches long, coiled up and living under the skin, they continue to live. So the approach has to be to provide treatment in a sustainable fashion over a long period of time, meaning 6- to 10 years to be able to reach a point where all of the worms are dead.
So there have been a couple of approaches to using this very important tool, Ivermectin… Mectizan, donated by Merck and in mass drug administration campaigns. You can use the medicine to control blindness and skin disease. That would require your treating basically forever because you’re not going after ultimately getting rid of these adult worm parasites. Or you could use the medicine much more aggressively, treating more frequently and making sure that everybody in these areas accepts to take the treatment. And in that case, you can reach a point where all of the worms are completely eliminated from the human population, and you can stop your treatment campaign. So it’s very important to recognize we have a new tool just emerging in the last 30 years and two ways to use the tool in mass drug administration campaigns – either to go for control where you don’t have as much blindness and skin disease but you don’t finish the job… or elimination, where you use the tool more efficiently and more aggressively, where you do reach a point where you can safely stop treatment. And that’s a very important thing for the audience to grasp.
Denver: Right. And I know you’re an advocate of the latter. But looking at the frequency, how often would you need to take that medication the first way of doing it – control? How often would you need to take it if you were trying to eliminate the disease?
Frank: So, again, I’ll go back to my own personal story. The same year that Merck made the decision to donate this medicine to fight river blindness, I was assigned by the CDC to go to Guatemala, one of the American countries afflicted by river blindness, and became engaged in research studies using this medicine to not just control river blindness there, but to completely get rid of it from the country. The approach that was used was again mass drug administration campaigns in the communities at risk, twice per year, reaching 85% coverage of the people eligible to take the medicine. People eligible to take the medicine are people over five years of age, and we don’t use the medicine in pregnant women, not because it’s dangerous, just because it’s usually better not to give women in pregnancy any kind of medicine if you could avoid it. So those are the approaches that were used in Guatemala, and the research showed very clearly that twice per year treatment at that level of coverage could break the transmission cycle, and that you can ultimately get rid of the infection using this medicine.
So I became convinced of this opportunity very, very early in my career– that we ought to be using Ivermectin Mectizan in an aggressive way to break transmission. I’m happy to say that last year, Guatemala was verified by the World Health Organization as being free of river blindness now, and that is an amazing thing that makes me extremely happy.
Denver: I bet it does! And congratulations to you!
Frank: Thank you!
Denver: So let me ask you this, Frank. Let’s take Mectizan, if it’s provided at no cost by Merck, which I think is an extraordinary story in and of itself, but what are the challenges you face, the hurdles you must clear, to successfully distribute this medication so that it will ultimately lead to the elimination of river blindness?
Frank: That’s a really great question, and I think the challenges in getting this medicine out are the things that first get me out of bed in the morning every day excited, and second, really have such a range of challenges or of areas and fields that make it extremely interesting. What am I saying? For example, you have to convince communities and, as a matter of fact, bring communities on as partners in this effort to not just accept treatment but want treatment and be willing to organize themselves and their communities to take the medicine, to help distribute the medicine. Volunteerism is a very, very important part of this campaign. So at the very grassroots level– communication, health education efforts–need to really understand and use– anthropologists and social science approaches– the best communication messages to have communities get engaged in taking this medicine. And that’s been very successful. That’s one point.
The second challenge is the sustainability of the program in terms of “It’s not just a one treatment, and you’re finished.” These programs really need to go on for five, six, seven or more years functioning very, very well. So the challenge is to get this medicine out in areas that have the most rudimentary health systems. The primary health care systems in areas in Africa where we’re working, or areas in Latin America where we have worked, are trying to reach the most remote communities. These are facilities that are resource-poor and they have to move outside of the clinic into the surrounding communities that they serve. So the second challenge is the health systems challenge, in terms of getting this medicine out.
I would say the third challenge becomes the political and financial challenge of being able to leverage the Merck donation, which is an incredible donation in terms of taking into account the actual cost of these programs. The cost of the medicines and these programs are easily 50% of the overall cost. So if you could imagine, 50% of the cost of reaching our goal has been put on the table, but we have to find and interest other donors and the country’s government in investing in these programs and leveraging this donation. That is a big challenge because river blindness is not a disease that kills. It blinds, it maims, it causes stigma, it causes misery, it perpetuates poverty. But it does not occur in an epidemic form that is killing people or reaching urban elites in these countries, or a risk to travellers such that it’s a risk to Americans or Europeans who might travel. All of those things put fundraising at a disadvantage for river blindness efforts, control or elimination, that become another major challenge.
So those are three challenges that I’d like to mention. There are many more, but the communications at the community level, the weak health infrastructure in the countries, and then raising the additional 50% needed to sustain these programs and reach our goal.
Success in Nigeria will have important repercussions throughout Africa in terms of motivating other countries to move along the elimination path…the elimination path is the idea where we do not have to sustain Mectizan mass drug administration forever, but we can reach a point where we can stop treatment safely. And the benefits from eliminating this parasite will go from generation to generation into the future.
Denver: Those are some great insights, Frank. In your proposal to 100&Change, you have specifically focused on the country of Nigeria. Why did you decide to focus there?
Frank: One reason to focus on Nigeria is that 40% of the people at risk for river blindness live in Nigeria. Nigeria is the country most afflicted by river blindness in the world. So it’s hard to talk about a goal of eliminating river blindness globally without thinking about Nigeria. It is a linchpin. Success in Nigeria will have important repercussions throughout Africa in terms of motivating other countries to move along the elimination path. Again, the elimination path is the idea where we do not have to sustain Mectizan mass drug administration forever, but we can reach a point where we can stop treatment safely. And the benefits from eliminating this parasite will go from generation to generation into the future.
Denver: You touched on this a little bit before when you were talking about the frequency of taking the medication. But it was back in 2013 when The Carter Center announced it no longer just wanted to control river blindness, but you set that more ambitious objective of eliminating it. What was the tipping point, Frank, that changed your goal from one of control to one of elimination?
Frank: One of the important tipping points was a demonstration by 2013 that this indeed could be done. It could be done in the Americas where at this point, speaking in 2017, four of the six countries in the Americas originally afflicted with river blindness have now eliminated the parasite and have been verified to have done so. That’s Colombia, Ecuador, Mexico, and last year, Guatemala.
But in Africa, many of the experts were saying, “Well, that’s fine for the Americas. It can be done in the Americas. The problem is much smaller there. But the problem is much larger in Africa, and we aren’t convinced this can be done.” But demonstrations in Sudan, which eliminated river blindness from a very important focus there called Abu Hamad, and in Uganda, which has eliminated river blindness from 4 of its 17 foci – meaning transmission areas – and probably 10 of the total of 17 in Uganda are well on their way toward being eliminated. We now had a proof of principle, a demonstration of concept that this could be done in Africa as well.
Also in 2013, the countries were coming on board with the idea to do this. So Sudan and Uganda decided they were going to have a national policy moving from control forever to elimination, a set point in which they would succeed in getting rid of this parasite. By 2013, Ethiopia and Nigeria had also made that commitment. The Carter Center, in solidarity with those countries where we worked, also then changed our policy. That’s not to say we haven’t been arguing internally with the countries that they should consider that for many years. But out of respect, we don’t like to get too far ahead of what the national programs want to do. It’s the national programs and the countries at the end that are going to be successful in doing that. The Carter Center, and hopefully the MacArthur Foundation, will be there to help.
Denver: Well, it certainly changes the trajectory of this effort. Frank, share with us a little bit about your personal story and how you went from a guy who was interested in history and literature and humanities, dreamed of being a photographer, to becoming the point person on a mission to rid the world of river blindness. How did that come to pass?
Frank: I think a common thread in this is that ever since I was a young kid, I enjoyed travel, and I enjoyed cross-cultural experiences and languages. I was an exchange student in Austria. As a medical student, I spent almost a year in Brazil. German and Portuguese were of interest… then of course the five years I spent in Guatemala later. But from very early on, I had this great interest in travel. And so some of the thoughts of: “I want to be a National Geographic photographer, and I want to understand languages and cross-cultural social elements better all fit in this particular interest.” My father was a surgeon, a physician. I grew up around physicians and have always had great respect for the medical profession. Actually, my first year in college, I decided that I was going to drop all my humanity focus and move into science and think about being a physician, but a physician from a standpoint of being able to do international health so that I could explore my wanderlust and my interest in social sciences.
I hope from what I’ve described a bit, you can sort of see how those things have come together. Because in addition to the medical opportunities with this great medicine, we have the social science element which is the community communication, the political piece which is political will and financial obligations to reaching this elimination. And a crosscutting throughout is the idea that eliminating a disease would represent just a wonderful accomplishment. And because everybody comes along on this particular trip, it is a great exploration in justice and equity.
Denver: Well, I do see it is. As a matter of fact, I think you said to your family you wanted to be a physician who made a difference. Let’s turn our attention to 100&Change initiative. Now, if you should be announced as the winner of this $100 million award this coming December, Frank, how would you go about utilizing those funds?
Frank: Well, I think I would celebrate if we were so lucky as to get this award, open a bottle of champagne and probably at the second glass say “Oh, boy! Here we go!” because writing a proposal and executing the idea are two different things. I have great conviction that Nigeria can do this, and I think it’s an important point for your audience to know that we wrote at The Carter Center, we wrote this proposal in support of the national plan developed by Nigerians to eliminate river blindness from their country. There will be no need to go and sell this idea to anyone in Nigeria. Everyone in Nigeria involved with river blindness knows that The Carter Center has made this proposal, and we’re all part of a big community that is ready and willing to use these resources to execute the plan that’s been developed by the Ministry of Health in consultation with many different partners that include The Carter Center.
So the Carter Center has had a long experience in Nigeria, beginning with the successful guinea worm eradication program that was launched there in 1986 and was successful somewhere around 2010. We have a lot of confidence in the Nigerians, and the Nigerians have a lot of confidence in us. I think that we’ll hit the road running very quickly. We all wish we had the money now because there a lot of things we would wish to do right now in 2017 that we’re unable to do because of scarcity of resources.
The sustainability, which is a very important piece of the MacArthur 100&Change, of this particular challenge is that you don’t need to scale up and maintain this treatment program. You can scale this program up and then scale it down, so that you won’t need to invest anymore, but the change will last forever. That is the magic of an elimination or an eradication program…that you ought to be done, you ought to have closure in the investment effort.
Denver: Let me close with this, Frank. You have some very stiff competition in the other semi-finalists, seven of them. They all have bold and really well-thought-out proposals. So, what is the case that you would make that this submission by The Carter Center to eliminate river blindness in Nigeria is the one that has the most promise and potential to show real and measurable progress in solving a critical problem of our time?
Frank: I think the idea behind 100&Change, $100 million that leads to lasting change– is a great fit for what we want to try and do in Nigeria. There is a solution to river blindness, and we have 50% of the resources on the table ready to make this happen. It’s been demonstrated that Ivermectin Mectizan, this miracle medicine has worked in the Americas and other parts of Africa. We’re poised to have this success by having a plan that will work, and we need the resources to make this important change that will affect the lives of the poorest of the poor in ways that will help generations into the future.
The sustainability, which is a very important piece of the MacArthur 100&Change, of this particular challenge is that you don’t need to scale up and maintain this treatment program. You can scale this program up and then scale it down so that you won’t need to invest anymore, but the change will last forever. That is the magic of an elimination or an eradication program… that you ought to be done, you ought to have closure in the investment effort. That would be my argument to the MacArthur Foundation as to why they ought to support elimination of river blindness from Nigeria over the other seven highly worthy proposals. I wish all eight of us would be successful. There are so many problems in the world for which there are solutions. I think we have eight examples of that on the table, and it’s a very stiff competition.
Denver: Absolutely, and by eliminating it, you free up all those resources in those countries to tackle other problems. Well, Dr. Frank Richards, the Director of the River Blindness Elimination Program at The Carter Center, I want to thank you so much for being with us this evening. Now, if people want to learn more about this work, is there a place that they can go to get that information?
Frank: They can go to www.cartercenter.org. That’s our website, and on that website, you can click on the 100&Change competition and hear more about the team and the proposal.
Denver: Great! Well, my best wishes to you and your colleagues in the MacArthur Foundation 100&Change competition. It was a real pleasure to have you on the program, Frank.
Frank: Thanks so much for the opportunity.
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