Navigating River Blindness: Empathy at Work

A Conversation with Bruce Benton
World Bank Manager of the Onchocerciasis Coordination Unit, Africa Region (Retired)

David: Thank you, Bruce, for being with us today. I understand that you are writing a book about the global effort to eliminate onchocerciasis, a tropical disease also known as river blindness. You played a unique and crucial role in this effort through your work at the World Bank. Two years ago, The Carter Center hosted an event to celebrate the 25th anniversary of the Mectizan Donation Program (MDP), launched by the pharmaceutical company Merck to donate Mectizan – the only safe and effective drug for river blindness – to those who need it, free of charge, for as long as necessary. The distinguished speakers, including Bill Foege, Roy Vagelos (former CEO of Merck), and President Carter, recounted the remarkable events that led to the development and donation of Mectizan, the unprecedented public-private collaboration that it unleashed, and the tremendous success of the program in reducing the scourge of river blindness. Those working at Merck at the time shared a strong consensus that, “people were going blind, we had to do something, and the decision by Roy Vagelos to donate the drug was absolutely the right thing to do.”

foegecartervagelos

25th Anniversary Celebration of MDP at The Carter Center

In many circles, the desire to relieve suffering is known as compassion; I was struck by the fact that, during the entire evening, no one mentioned the word “compassion.” During your time at the World Bank, Bruce, you developed the partnership and raised funds to support the delivery of Mectizan to thousands of remote African villages.  I wonder, from your perspective, would you use the word compassion to describe what motivated these decisions and actions?

Bruce:  Compassion is certainly part of it, and empathy, which I learned as a kid. My father died when I was five. We never knew what exactly happened but it appeared he died from an allergic reaction to penicillin. It was 1948. Penicillin was new and they were testing it. His death had an impact on me, a huge impact. My mother never remarried. Growing up with a single mother who was doing the best she possibly could without much money, I felt disadvantaged and knew my mother was also disadvantaged as a single parent who had to work long hours to raise me. From early on I had an empathetic drive to help others that I thought were disadvantaged compared to the average person.

Global health is about alleviating misery among severely disadvantaged groups, and that’s very clear from the river blindness, or Oncho, work. I find global health work extremely fulfilling, but I don’t know if I would have felt that way if I hadn’t been in Africa, first as a Peace Corps Volunteer in Guinea and later as a World Bank official, and witnessed the people affected by disease, notably Oncho. I saw firsthand the glaring severity of that disease and the devastating human toll it was taking on the absolute poorest people living in remote rural areas. This stirred my feeling of empathy because I knew the pain of being disadvantaged from a young age, and wanting to alleviate that pain for others was something that became part of my DNA.

I guess you can call this compassion. It’s a form of it. I saw how much the overall Oncho control effort, notably the drug, helped people. Within a day or so it alleviated the horrendous, unbearable itching caused by millions of microscopic worms migrating just beneath the skin throughout the entire body. The cessation of itching motivated people to line up to take the drug, which in turn enabled the overall control effort to succeed. I would not have been as driven as I was to do my job as World Bank Manager of the Oncho control effort if I hadn’t seen the direct results of that effort making a huge difference in people’s lives.

riverblindness_life_cycle

River Blindness Life Cycle from PATH

David:  What inspired you to join the field of global health?

Bruce:  It was accidental. I’m an economist by training, but for various reasons World Bank management thought I would be suitable to spearhead the Bank’s Oncho control / elimination effort in Africa. I knew then that global health was going to be important both for African development and in my own career path.

When I first heard about river blindness (Oncho), I had little idea of what it was. It was not a big-name disease like malaria or HIV/AIDS so I questioned its importance. But when I started investigating the disease and the suffering it caused, I realized it was extremely important particularly for the rural poor in Africa and became enthusiastic about doing the work. In fact, I got to the point where I became less concerned about advancing my career than by deriving personal fulfillment from the work.

To advance at the Word Bank, you needed to keep a job for about five years and then move on, and up, to another position. If you had been working on African issues they wanted you to work on Asian or Latin American issues. By frequently changing positions, you might become an expert in how to operate effectively in that large institution, but was that the best way to maximize one’s impact on Africa and the poor? I wasn’t so sure. I wanted to stay where I was as Manager of the Oncho Programs because I thought I was making a difference and felt fulfilled. Eventually I was pressured by one of my Directors to rotate to a different office to meet the rotational requirement expected of professionals working in Bank “operations.” At the time, I confided in former World Bank President, Robert McNamara, about my dilemma. I got to know Bob McNamara because he had launched the Oncho program in 1974. He gave me strong moral support in my preference for remaining as the Oncho Manager. He said to me, “Development is a long-term process and requires the continuity of good staff. Resist the pressure to move if you can and stick with the Oncho program.” So I did – for 21 years.

David:  It sounds like your early childhood experience predisposed you to wanting to relieve suffering.

Bruce:  Absolutely. There’s also something about health work that is very direct and has an almost immediate impact on alleviating pain and misery. When I was young and returned from the Peace Corps I wanted to do development work. I realized after a while that “economic development” by itself did not have the same World-Bankmeaning or personal impact that health work does. With development, it’s not always clear whether societies understand or want to become  “developed.” We presume they do because we can’t imagine any other way for ourselves to live, and we think they must want our way of life, too. Global health, on the other hand, means, for me, helping the poor and disadvantaged lead satisfying, pain-free, and disability-free lives – even if they don’t become “developed.” But, of course, if they can lead disability-free lives, they have a greater chance of pursuing their own development opportunities.

My passion for this work has been passed on. My daughter, Brooke, who is about to receive her Master’s degree in Public Health, feels pretty much the same way. She has entered the field of global health and is focusing on children and women who are the most disadvantaged, as well as indigenous population groups who don’t receive equal treatment when it comes to health care. However, I don’t think she and I have talked much about compassion being a part of this. Maybe I should do that. I think we just take for granted that compassion is what it’s all about. It would be better to be more explicit about our motives with respect to our involvement in global health.

David:  Yes, that would be a great conversation. Was influencing your daughter in this way intentional?

Bruce:  No, not at all. As a family, we had a great trip to Africa when I was working on the Oncho programs. A program annual meeting was held in Accra. The program provided us with two Land Rovers for the six of us to drive up-country for a week. We drove all the way to the top of Ghana to the border of Burkina Faso. We witnessed the impact of river blindness, guinea worm, and lymphatic filariasis on rural Ghanaians. My kids became fascinated with these diseases. I thought my daughter was too young to be influenced much, but it looks like global health work rubbed off the most on her. She still talks about that trip and includes this story when she is filling out applications for grad-school fellowships and work. I was just doing my job and they were picking up on it. I have two kids, out of four, who are now working in health.

David:  What it is that you’ve found most meaningful about your work at the World Bank and particularly with APOC (African Program for Onchocerciasis Control)?

Oncho_map

Bruce:  It was making a difference in a lot of people’s lives. In this work, I could quantify what making a difference meant; a distinction between living a life of misery or a life of relative normalcy, such as getting married, raising children, and the like. Tens of millions of people would not have been able to have a regular life without this program. It also alleviated real suffering and pain, which I witnessed in the field. I couldn’t directly experience what they were experiencing ­– millions of microscopic worms migrating through their skin causing incessant, unbearable itching. People were scratching their skin nearly 24 hours a day often with stones to somehow get relief. I saw them sitting around with their heads in their hands. They were not smiling, or talking with each other, or experiencing joy of any kind. It was pretty clear these people were suffering and feeling hopeless. Mectizan alleviated the itching in a day or two, and had an immediate pick-up effect on them. Even those who had already gone blind took the drug to alleviate the itching and felt better as a result.

David:  What were the most challenging aspects for you while trying to alleviate that level of suffering, and scale up and manage the program?

Bruce: I got a lot of satisfaction out of making sure that the program received funding. This was difficult and often stressful. It was my job to meet with 27 donors around the world every year and help them understand how their donations would lead to successful control of the disease. It was vital to keep them engaged over the long-term because both of the Oncho programs would last more than 20 years.

There were a couple of times when it looked like the first Oncho program – The West African Onchocerciasis Control Program (OCP) – might fail. At one point, there were infective blackflies capable of transmitting the disease coming into the program area from neighboring countries. The only way to salvage the program was to double its size to control the blackflies at their source by bringing four new countries into the program. At another point, the flies became resistant to the least expensive insecticide that we were spraying on the blackfly breeding sites to prevent ongoing transmission of the disease. To combat this, we had to use more expensive insecticides in rotation and the costs and the need for donor funding increased enormously.

In another case, a depreciating US dollar threatened to financially undermine the program effort. Most of the contributions were coming in dollars into the Trust Fund that I managed at the World Bank, but the expenses for the program were paid out in French francs for program staff and Japanese yen for all of the program’s vehicles. When the dollar value declined, the program’s costs increased 35% in dollar terms. We thought all of these factors taken together – blackfly reinvasion, blackfly resistance, and a depreciating dollar – would bring an end to the program. And, they almost did. The only way to surmount these challenges was to secure substantial increases in contributions from every donor while bringing in a sizable number of new donors. This whole situation was extremely stressful; we experienced a lot of pressure, and had a very real concern about the possible failure of this first major effort by the World Bank to get involved in health. Then, there was the travel. I had four children and was traveling 40% of my time. That was hard and, in turn, placed a great deal of stress on my wife, Patricia.

David:  On the one hand, I hear a deep compassionate desire to alleviate suffering. Your efforts were motivated and sustained by witnessing the relief that you saw in the field. On the other hand, much of your time was spent educating donors, working within big systems, and balancing budgets. When you were traveling, jet-lagged, and caught up in administrative details, what did you do to keep the faces of those you were trying to serve in front of you?

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“Sightless Among Miracles” River Blindness Statue at The Carter Center

Bruce:  It was just there, a fundamental part of everything that was behind all I thought about and worked to achieve. It wasn’t something that I was conscious of or talked about, but the reminder of providing relief was the driving force behind it all, no question about that. As a child, I received help from several key people besides my mother who stepped in after my father died – an uncle and my two sets of grandparents. Their compassion and attention meant a lot to me. Hence, helping others became part of my own DNA.

David:  Thank you, Bruce. What message would you have for young people who are potentially interested in the field of global health?

Bruce: If you have a passion for helping disadvantaged groups, global health is a great way to go about it. I was focusing on neglected diseases – neglected because the people impacted are also neglected and disadvantaged. These kinds of diseases touch the poorest of the rural poor often eking out a living. You don’t get rich monetarily by working on global health but there is the opportunity to become rich in psychic and professional fulfillment. Moreover, if you don’t do it, the work may not get done. So if you want to do good work, join the global health effort. And, if you’re lucky enough to work on a program that is successful, you can wind up making a difference in millions of people’s lives – a payoff, in terms of personal fulfillment, which is immeasurable.

Benton headshotFor 21 years as World Bank Manager of the Onchocerciasis (river blindness) coordination unit, Africa Region, Bruce Benton was responsible for overall policy and strategy formulation, donor coordination, fund mobilization, and oversight of control operations for the Oncho programs. He was also responsible for World Bank participation in programs to eliminate Guinea Worm and Lymphatic Filariasis throughout Africa. Mr. Benton holds an M.A in Economics from the University of Michigan and an M.A. in International Studies from Johns Hopkins University.