In the 1980’s, there were millions of cases of Guinea worm disease across the globe, mostly in rural Africa. Donald Hopkins, MPH ’70, has spent 40 years working to eradicate this painful and debilitating disease – and he’s had remarkable success. Last year, there were only 27 cases worldwide.
In the latest episode of Better Off, Donald Hopkins talks about lessons learned from his quest to eradicate Guinea worm disease.
Guest: Donald Hopkins, MD, MPH ’70, former director of all health programs at The Carter Center, currently the special advisor for Guinea worm eradication at The Carter Center.
More about Donald Hopkins and Guinea worm disease
Watch the inaugural Donald Hopkins Scholars Lecture:
Learn more about The Donald Hopkins Predoctoral Scholars Program.
More about Donald Hopkins:
Anna Fisher-Pinkert: From the Harvard T.H. Chan School of Public Health – this is Better Off, a podcast about the biggest public health problems we face today . . .
Donald Hopkins: People would say things like, but that’s not a virus. You don’t have a vaccine, you’re depending on persuading people to change their behavior. That’s never going to happen.
Anna Fisher-Pinkert: . . . and the people innovating to create public health solutions.
Donald Hopkins: It’s our job in public health, to try to keep everybody oriented to the real goal, which is, or should be, to reduce disease, reduce suffering and people.
Anna Fisher-Pinkert: I’m your host, Anna Fisher-Pinkert.
In about a week, we’re going to hit the one year anniversary of the COVID-19 pandemic. It’s becoming clearer and clearer that the pandemic will end, but not as quickly or as definitively as we had hoped.
Public health and health care workers are burned out. Scientists are burned out. I’m burned out! Probably you’re burned out.
So today, we’re bringing you some positivity. We’re going to talk about Guinea worm disease. You may not have heard of it, but this parasite once affected millions of people and is now on the verge of eradication. And we’re going to meet Dr. Donald Hopkins, the man who has made it his life’s mission to work with communities to combat this disease.
Today, we’re better off with Donald Hopkins – Guinea worm eradicator.
Today, Donald Hopkins is renowned in the field of public health, and he has even leant his name to a scholarship that allows students from underrepresented groups the opportunity to study at Harvard Chan School. Hopkins credits his own educational experiences as the reason he became passionate about public health.
Donald Hopkins: I wanted to be a doctor for as long as I can remember, long before first grade. But when I was in college, I got a scholarship to study in Europe. And during the year some colleagues and I went down to Istanbul, Greece and Egypt. And it was in Egypt, in addition to looking at all the monuments, I noticed all of these people, adults and children, that had flies around their eyes and something going on with their eyes. I didn’t know at that time what it was. I know now it was trachoma. But I just saw all these young people and adults with this disease. And that made me decide that when I got to medical school, I wanted to work especially on tropical diseases.
Anna Fisher-Pinkert: In the 60’s and 70’s, Donald Hopkins helped lead the successful campaign to eradicate smallpox. In 1980, the same year that smallpox was eradicated, Hopkins realized that there was an opportunity to combat Guinea worm disease – a non-fatal but devastating parasite that affected an estimated 3.5 million people, most of whom lived in rural Africa. One day, Hopkins was reading a magazine from the World Health Organization, and he learned about new initiatives aiming to provide clean drinking water to people around the world by 1990.
Donald Hopkins: But I realized they did not mention Guinea worm disease at all. Unlike diarrheal diseases and some other things, cholera, typhoid that they were talking about, which are transmitted by – those other things being transmitted by contaminated drinking water, by dirty fingers, by contaminated food, guinea worm disease is only transmitted by drinking water. And therefore, I realized if they provided safe drinking water for everybody, that would eradicate guinea worm disease altogether. And so I embarked with colleagues at CDC on an effort to convince these people or help them to understand this God-given opportunity to include among the things they aimed to do, eradicating Guinea worm disease.
Anna Fisher-Pinkert: The Guinea worm is a parasite, and it has a unique life cycle that allows it to get into human bodies. Just a head’s up: The next minute or so will include some graphic details about Guinea worm disease.
Donald Hopkins: People get infected by drinking contaminated water that contains these microscopic larvae inside of a small water flea, so-called. No symptoms for a year. But then after a year, the person begins to experience pain at some point, usually on the lower legs or foot, or ankle. By that time, the adult female worm is getting ready to emerge from the body. She creates a painful blister. People know that if they put that part of their body in water, cool water, the blister will rupture, and at that point the worm ejects hundreds of thousands of microscopic larvae back into the water. And in the water, they have been eaten by these tiny water fleas and people drinking water containing those infected water fleas become infected.
Anna Fisher-Pinkert: Then, a year later, the blisters appear, and the cycle begins again. The disease is rarely fatal, but it is extraordinarily painful.
Donald Hopkins: These worms, when they were emerge, the female worm is about two to three feet long, about the width of a thin strand of spaghetti and an ivory color. Most people have only one worm to emerge in a season, but some people can have dozens of worms to emerge. And these worms don’t just come out. They emerge only a fraction of an inch, usually, per day. So this process normally can take up to one, two months or more. And in the meantime, it’s very painful. Painful to the degree that people has a worm coming out of your leg, for example, have trouble walking. Children can’t walk to school, farmers can’t farm. Parents can’t keep after their toddlers. It impacts not just people’s health, but their agricultural productivity and education in places where there are schools.
But it usually doesn’t kill people. People also do not become immune. So in these so-called guinea worm areas, people are subject to infection year after year after year and not just individuals. This thing is seasonal and depending on where geographically one is, the guinea worm season is either in the rainy season or the dry season. In the old days, we would have 30, 40, 60, or more percent of a village affected at the same time, and that period when the Guinea worm season so called, often coincided with a critical period for planting or harvesting crops. And that’s why it had such a tremendous impact on agriculture. So I would just ask you to just imagine what it’s like when you walk into a village with so many people of all ages, lying around unable to move without pain and just suffering for a long period. It was a terrible disease, even though it didn’t usually kill people.
Anna Fisher-Pinkert: People not only had to cope with the pain of the disease itself – but if none of the adults in a household can work, their family could also suffer poverty and malnutrition.
Donald Hopkins was convinced that this disease merited an eradication campaign on the scale of the smallpox campaign he’d just completed. But when he started trying to convince the global health community to take on Guinea worm disease, he met a lot of resistance.
Donald Hopkins: Having worked in the smallpox program, we encountered a lot of skepticism at the beginning and people would say smallpox had just been declared eradicated and that was a big deal with people. So we come along, talked about eradicating this parasite and people would say things like, “But that’s not a virus. You don’t have a vaccine, you don’t have a treatment. You’re depending on persuading people to change their behavior. That’s never going to happen.” We also were handicapped by a couple of other things. One was that unlike smallpox, which had an incubation period of two weeks, in Guinea worm as I’ve said, the time between a person became infected and when this parasite began to come out and the person knew they were infected, that period averaged about one year. And so, whereas in smallpox, somebody starts having this rash erupt and you can you can ask them, what were you doing two weeks ago, try to figure out where they became infected, and they could easily make that connection. Telling somebody that this worm coming out on the body now, is a result of something they did a year ago. . . It’s difficult for any human being to remember what they were doing a year ago and to make the association, because people didn’t understand this parasite in the first place, to try to help them make the association between wherever they were drinking contaminated water a year ago and this thing coming out, that was just a bridge too far for people to try to understand.
Anna Fisher-Pinkert: But people living in areas with Guinea worm disease did have their lived experience with the parasite.
Donald Hopkins: An area of southeastern Nigeria, for example, a physician I was working with there once said to me, he said, you know, in our language in this part of the country, we call this disease what’s translated into English as the “silent magistrate.” And I said, why is that? He said because people know that when there’s guinea worm season is approaching, that they are possibly going to be infected, but they don’t know for sure whether they’re going to be infected and they don’t know if they become infected where this worm is going to come out. Because while most worms came out on the lower leg, they could come out of any place on the on the body whatsoever. Nor would people know how many worms they were going to have. And so they were afraid to wonder what sentence the silent magistrate was going to mete out to them that year.
Anna Fisher-Pinkert: Instead of approaching communities with messages of fear, Hopkins decided to offer knowledge.
Donald Hopkins: It was important to approach people in these rural communities with empathy and respect because they’re human beings and whatever their circumstances, they know people. I mean, and so if you if anybody if you come in there with a high maybe attitude that, you know, I’m the doctor, I’m the this or that, and I’m here to tell you what to do, that doesn’t go over well. In fact, people will just turn you off completely. So you have to approach them with respect, with the idea that you know that they understand their community very well. You also know that they don’t want to suffer from this Guinea worm disease. And so what you’re trying to do is help to show them how what they can do to not continue suffering from this disease. If you approach it that way, then you have the opportunity to help them understand about the disease.
We found that the most effective way to helping people make the association between drinking contaminated water a year ago and suffering from this disease now, was to take them down to the pond or wherever they’re getting their drinking water from, scoop up some water out of that pond where they’re taking their drinking water from, filter that water through a fine cloth and then back wash the debris that accumulates on that cloth that you strain their water through, backwash that into a jar of clear water with a clear jar or glass and let them see the little things that are swimming around in that water they’re drinking. and that helps people to make the connection that, oh, you folks are coming to help us, are actually showing us how we’re getting this disease. And that was a powerful teaching tool. The other another powerful thing was then for them to begin to hear testimonials from neighbors in a neighboring village or other places who have listened to these health people the year before, had also had used to have a lot of guinea worm disease, and are now no longer suffering or not suffering as much from the disease. That also was a very powerful tool.
Anna Fisher-Pinkert: The Guinea worm eradication program enacted all sorts of low-tech, highly effective interventions – health education, teaching people to filter their water, using larvicide to kill Guinea worm without harming fish. But Guinea worm disease had been ignored for so long because it is a disease that largely affected people in rural areas, who have little political capital in their respective nations. To enact major, country-wide change, Hopkins had to get the attention of policymakers. In 1986, Hopkins’ work on Guinea worm caught the attention of former President Jimmy Carter. The Carter Center, a nonprofit founded by Carter, partnered with the CDC to lead the campaign against Guinea worm disease.
Donald Hopkins: I shall never forget that when we went with President Carter and announced that the Carter Center was going to begin assisting the government of Ghana to work against Guinea worm disease. And there was this big splash, President Carter was there. One of the first letters that was written into the newspaper in the capital city, was, someone wrote to say that they were very happy that this was going to start in rural areas, unlike many other big programs announced in the capital, because he said the people in Accra, the capital, are washing their cars with water that is cleaner than what we have to drink here. And I’ve never forgotten that. And so there was a disconnect between what was possible, by the way of helping people’s lives, and what people were still suffering from. And so, among the ways we got it back was to, as I like to say, use data to make the right people uncomfortable.
Anna Fisher-Pinkert: When the Guinea worm eradication program started – there was a lack of data around the disease. So Hopkins started counting cases country by country, and village by village – and reported those numbers to ministers of public health. This strategy eventually turned once-reluctant policymakers into Hopkins’ allies.
Donald Hopkins: Now, there was the shaming aspect in the beginning. But after that, countries began putting in place these various combinations of interventions, you began to see particularly in the beginning, rapid reductions in the numbers of cases. That unleashed energy at all levels. Pride at the ministry of health, pride in the peripheral health levels, and among the village based health workers that we then helped the ministries to train. And you and this was the lesson in the smallpox program also. Whereas In smallpox, you can measure and see the difference every two weeks. In Guinea Worm, it was a year, but what we did was measure the monthly case counts throughout the year and then in the second year we have nationwide surveillance each month because the incubation period is about is averaging 12 months. Each month, what’s happening in this country this year reflects what that same country did the same month a year before. And so the first time we sent a graph like that by mail, long before email was possible, to the minister of health in Ghana, we immediately got a response back that the minister wanted a dozen copies of that color graph because he wanted to pass it out at the next cabinet meeting to let people see what his ministry was doing and how they were reducing cases of guinea worm disease. And so that evidence of progress just got all kinds of people excited.
Anna Fisher Pinkert: I think that’s a really interesting thing that as you’re talking about that, I’m thinking about the current pandemic and the challenges that we’re facing in two ways: one, to convince people to enact behavioral change and two, to convince leaders that actions are necessary in order to bring case counts down, bring vaccination count up. And I’m wondering what your thoughts are about the current crisis that we’re in and what lessons we can pull from the Guinea worm eradication project that apply to where we are now?
Donald Hopkins: I think not just of Guinea worm eradication, but also of the HIV/AIDS epidemic and the beginning. Because in the beginning, HIV/AIDS people were waiting for a vaccine. And it was that “Woe is us. We can’t do anything until we get a vaccine or a treatment.” And I think of the many talented people that the world lost in the beginning because we didn’t have proper preventive measures, we didn’t have a vaccine, we didn’t even have a treatment then. But in the beginning, very early on, we understood that this was this is that disease was sexually transmitted and that using condoms, for example, was an effective way of preventing transmission of that disease. Right now, with this COVID-19 pandemic, before we got a vaccine, we already knew that washing your hands, social distancing, wearing a mask were nontechnical, I’m sorry, 21st century, but this is a low tech thing. Those were effective, imperfect, but effective ways of helping to reduce the transmission of this disease.
I get unhappy even now when I don’t see enough reporting about the proportion of people in individual communities, cities, states that are using are wearing masks. Vaccines are great. And thank God we have now a vaccine for covid-19 and we have these very effective treatments for HIV/AIDS. We should not not use other less sexy, less fancy, less technical interventions in the meantime to help save people.
Anna Fisher Pinkert: I think that that makes a ton of sense, I mean, when you’re talking about Guinea worm eradication, a lot of it is not expensive. It’s doesn’t require technology. I’m wondering if you have thoughts on sort of the way that, you know, politicians in leadership understand the tools of public health and whether, you know, we often turn to those high tech solutions when a low tech solution will be as or more effective.
Donald Hopkins: I put that on us in public health. It’s not the politicians jobs usually I mean, unless they’ve gotten the masters in public health, it’s not your job to understand public health. It’s our job in public health, to help them understand public health and to help steer them away from the mindset that always fix on something shiny and fancy and so-called modern and try to keep everybody oriented to the real goal, which is or should be to reduce disease, reduce suffering in people. Whatever it takes that’s legal to do that. And so if that’s the goal that you have firmly in mind, then it becomes much easier for people to understand, well, you know, it’s nice. Let’s bring up these vaccines and treatments whenever we get them. But in the meantime, let’s save these people now, because when you’re dealing with something that’s potentially fatal, you can’t buy back those people’s lives. I mean, you cannot recover those people’s lives. And so whatever you can do in the meantime, while you’re waiting for the cavalry to come, if it ever comes, do what you can while you can now.
Anna Fisher-Pinkert: As you’re talking about your passion for this 40-year-long project of Guinea worm eradication, I mean, there have to have been times when things were not going well. You were not seeing the success that you wanted to see. And I’m wondering, you know, in those moments, what kept you going on this project and committed to this project when things were not looking so bright?
Donald Hopkins: Well, thank you for asking that, because the thing that’s kept me going is the fact that I had the experience early on of the successful smallpox eradication program. And I like to say that as a result of smallpox eradication, I was immunized against pessimism. It’s OK to be skeptical, but I was immunized against pessimism. Because I remember hearing early on people saying you’re never going to eradicate smallpox, smallpox can’t be eradicated, this that and the other reason and I saw smallpox eradicated. So thank God in the beginning and there were many people who know vaccine, you don’t have a treatment. This thing has a one year incubation period. You’re only dependent on persuading people to change their behavior. Moreover, these are poor people out in rural village. I’m immunized against that because of smallpox eradication program. You want to have perseverance because that’s what it takes.
Anna Fisher-Pinkert: One last thing that Hopkins is passionate about – public health education. He’s lent his name to the Donald Hopkins Predoctoral Scholars Program, which allows accepted students to study at Harvard Chan School, and is focused on providing access and opportunity to students from underrepresented groups. He thinks programs like this are vital – as is diversifying the field of public health. Hopkins himself came from circumstances where a higher degree wasn’t guaranteed.
Donald Hopkins: I was one of ten children. My father was a carpenter. My mother cleaned other people’s houses and she worked as a seamstress. We didn’t have a lot of money. We weren’t poor, but we didn’t have a lot of money. And so I benefited at several points in college and in medical school from the generosity of other people. And I mean the financial generosity as well as their encouragement of me. But the idea of scholarships to help people who would not otherwise be able to afford it, be able to take advantage of educational opportunities, is near and dear to my heart because I often wandered around in African villages and see the little kids running around in the dust. Every human being is born with a brain that’s wired differently from every other brain on the planet.
It’s important for folks as they approach problems of health and consider societal public health problems to have all of those perspectives, because people’s experiences are different. The more variety you can have, the greater the chance that somebody is going to have a perspective that’s going to be either in combination with somebody else’s perspective, or singularly, is going to figure out an effective solution to a problem that would then benefit everybody.
Anna Fisher-Pinkert: On February 25, Donald Hopkins delivered the inaugural Donald Hopkins Scholars Lecture at Harvard Chan School – covering his 40-year quest to eradicate guinea worm disease. If you want to hear the full lecture, or learn more about Dr. Hopkins, you can visit hsph.me/betteroffhopkins. That’s hsph.me/betteroffhopkins.
Subscribe to Better Off in your favorite podcast app to get episodes every other Wednesday. If you like the show so far, rate and review us – and tell your friends about the podcast, too.
We’re better off with our team:
Chief Communications Officer: Todd Datz
Senior Digital Designer: Ben Wallace
Production Assistant: Brian Le
Our editor for this episode was Mary Dooe
I’m Anna Fisher-Pinkert, host and producer of Better Off a podcast of the Harvard T.H. Chan School of Public Health.