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Atlantans on verge of eradicating worm disease

2:00 PM, Apr 20, 2012   |    comments
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Photo Courtesy of The Carter Center

ATLANTA -- Soon, perhaps within a year or two, headlines around the world will flash news of historic magnitude -- news that a crippling disease that afflicts children and adults has been eradicated, wiped off the face of the earth.

For most of the past 30 years, three people with the Carter Center in Atlanta, including former President Jimmy Carter, have been helping lead a team that's working to end a disease called Guinea Worm Disease.

What once seemed impossible is on the verge of coming true.

President Carter told 11Alive's Jon Shirek that he took on this mission because because the disease was causing so much suffering but getting so little attention.

"I'm 87 years old and I want to outlive the last guinea worm on earth," Mr. Carter said. "Oh, this is very important to me personally. It will be the second disease in the history of the earth ever to have been totally eradicated. The first one was smallpox, and this will be the next one."

In the some of the poorest parts of the world where there is only contaminated water to drink, only a few decades ago tens of millions of people suffered from Guinea Worm Disease.

"It swells up and destroys the tissue, so the aftermath is very similar to polio."

It is a gruesome affliction that is at least as old as recorded history.

The guinea-worm parasite lives in water, in larvae form.

People in the regions afflicted with the disease don't realize that when they drink the water, they are drinking the parasite. It reproduces and grows inside them, and incapacitates them with crippling pain.

"This parasite grows up to about a yard long, or a meter long," inside the body, said Ernesto Ruiz-Tiben, Ph.D., the director of the Carter Center's Guinea Worm Eradication Program.

He has dedicated his career to eradicating the guinea worm.

"This disease is terrible. This disease has been called the forgotten disease of forgotten people."

To this day there is no medicine, no cure, for it.

But since 1986, the team from the Carter Center has been enlisting governments in India, Pakistan and Africa to teach people simply to filter their water before they drink it.

"So we've had to convince them that this parasite is coming from their drinking water," said Donald Hopkins, M.D., the Carter Center's Vice President of Health Programs.

"If we can get people to filter their drinking water with a finely-woven cloth, with the nylon filters we give them, that will take care of guinea worm disease."

"These tools [the cloth water filters] are the simplest tools that we can use," said Ruiz-Tiben, in his office at the Carter Center in NE Atlanta. "This provides guinea-worm-free water. It doesn't provide pure water.... You can still get sick from it, but you won't get guinea worm."

"When we started" in 1986, said Mr. Carter, "we had 3.5 million cases in 26,500 villages, in 20 countries. We've been to every village, all 26,000 of them, to explain what can be done to eradicate guinea worm. So far, we've reduced that 3.5 million cases down, now, to a little bit under 1,000."

The worm is dying off because the only place it can reproduce is inside a human. Its life-cycle is interrupted when the larvae is caught in the cloth filters, and it dies.

"We expect it is within the next year or two that we'll see the last case of guinea worm disease on earth," said Hopkins.

The guinea worm, and the disease it causes, will soon be extinct.

"The goal here is zero cases, doing it worldwide," said Ruiz-Tiben. "It has happened only once, with smallpox. My personal goal has been to leave the world a little bit better when I leave it than when I first found it."

"And it's only been within the last few months," said Hopkins, "that I've been willing to admit to myself that, you know, we really are, now, finally very close. It is close, now."

"So it's a very gratifying and heart-breaking but also heart-warming experience," said Mr. Carter. "It's the realization that these people, once given a chance to improve their own lives, have done so, so effectively and so heroically."

Thousands of staff people and volunteers, and many government health agencies, have been involved, and donors from around the world have given hundreds of millions of dollars to pay for the campaign.

Once the last infected areas in Africa turn in their periodic reports stating they have zero cases of guinea worm disease, possibly within a year or two, then it will take two to three more years of careful monitoring to make sure the disease has not erupted again, before the world is declared free of the guinea worm.

For more information: cartercenter.org

On Twitter:  @JonShirek

__________

 

Excerpts of 11Alive's Interviews with three of the leaders of the eradication campaign:

 

Jimmy Carter

Well, as you probably know, when we started we had 3.5 million cases in 26,500 villages, in 20 countries. We've been to every village. All 26,000 of them.... to explain what can be done to eradicate guinea worm.

So far, we've reduced that 3.5 million cases down now to a little bit under 1,000 in 2011. Last year we had 1,015, something like that. 97 percent of which were in South Sudan. And the reason we've been slow in South Sudan is because it's been afflicted by war, between north and south, for almost 25 years. There's still a lot of violence there.

The primary obstacle has been the isolation of individual villages. Because they are villages separated from others that don't have any source of water. Either running water by stream or a deep well. So they have to get all their water out of a local rain pond, which fills up in the rainy season three or four months, and it stays dry the rest of the time. And the guinea worm eggs grow in those ponds.

So going into those individual villages, finding them, and teaching the people how to go about preventing the disease has been our biggest challenge.

(People are often illiterate, there is no radio, no TV, so we use posters using pictures to teach them)

Another thing that has delayed us quite a lot has been the fact that many of the guinea worm areas were afflicted by combat. By roving bands of bandits or by armed wars. And so we've had to go into these villages sometimes with our people suffering from danger. And that has delayed us to some degree. But we've made very steady progress ever since we started.

One of our basic purposes is to fill vacuums in the world. If this disease had been attacked by the World Health Organization or by Harvard University or by others, we wouldn't have gotten involved. We just go where other people don't much want to fool with a very difficult problem that we think is important. So we've gone into these villages on our own initiative. And we've had to recruit others to join us. It took us eight years, for instance, to get the World Health Organization to join us.

And the other one has been that we have been very successful in recruiting the top people from the Centers for Disease Control to come to the Carter Center to work full time on this particular disease. And at the CDC they had other duties to perform, but they came here because they were particularly attracted to devoting their whole lives to this project.

My drug czar when I was President was Dr. Peter Bourn. And later, after we both left the White House [in 1981], he became a deputy secretary general of the United Nations. And he was in charge of the Decade of Water. And he studied the problems that come from diseases caused by filthy water. Inadequate water. And so he came [to the Carter Center in Atlanta, which was founded in 1982] and gave a lecture on guinea worm as one of the key examples, and he pointed out to me, personally, that nobody was working on this disease because of its difficulty and because of the remote areas in which it afflicted people. So we decided to undertake this as one of our early projects. And so we have been in the forefront of the effort to eradicate guinea worm ever since.

"Did you think going into it that down the road you'd be at this point?"
We didn't know. We hoped so. But other people had tried and failed to attack it. But nobody has gone all out, to spend a lot of time and money -- we've spent, I would say, more than $250 Million, in all, over all of these years. Because it's a very expensive thing to send your experts in, or train people in local villages scattered all over a country, in the jungles or in the desert areas in a country. So that's very expensive. And shipping our materials in....

Also the broad area in which it was prevailing -- we had three countries in Asia, India and two others, and then we had the other 17 countries in sub-saharan Africa. So they were quite diverse and widespread. That took us a lot of time, as well.

We've had step by step progress in that time, and every few years we would have one more country that had completely eliminated the disease. And we got a lot of publicity from that. We were finally able to get some publicity about it so we could get big donors to give us money enough to continue with our effort.

We believe that we now have assurance of enough funds to completely eradicate the disease from the face of the earth. Although we know that those last few cases are ones that cost so much money.

And we have another serious challenge in South Sudan where 97 percent of our cases still exist because there's a lot of violence there and a threat of outbreak of another war between North and South Sudan.

"What is your personal goal to see, what do you want to see, here?"
Well I'm 87 years old and I want to outlive the last guinea worm on earth. And I still believe that -- we have enough confidence in our staff and the effort being made so that I can reach that goal. But it will be the second disease in the history of the Earth ever to have been totally eradicated. The first one was smallpox, it happened to take place while I was President of the United States. And this will be the next one. By the way, that was in 1979, so that's a long time between the total eradication of a disease.

This is very important to me personally.

(Mr. Carter has travelled on guinea worm missions many times, and he said that when he enters a country he always starts with the head of state:)

To say we've come here to help get rid of this disease in your country. Most often they didn't know about the disease, unless they came from a village that had it. And that was sometimes rare. So I've had to recruit them, because I was former President, to join in giving us support. But then we have gone directly to the villages. We don't send in our filter cloths or our money to the Minister of Health. We actually go and train the people in the country to do the work. For instance, now, as the end of our project approaches in South Sudan, we have more than 10,000 volunteers that we have trained to cover the villages where guinea worm still exists, and I think we have a little more than a hundred full-time employees, almost all Southern Sudanese citizens who are on our payroll. So that's how massive an effort it is just to get rid of our last few cases.

I would say two things. One is sorrow that they have suffered for 20,000 years, they and their ancestors, from this disease. It was recognized in the Bible as a firey serpent. So it's an ancient disease. Secondly, I've been gratified that the effort of the villagers themselves, once they learn what can be done, has been the factor that has brought us success. We can't stay there and monitor every person that goes in and out of the village pond or make sure that they use proper screening materials. But it's the realization that these people, once given a chance to correct their own lives, and to improve their own lives, have done so, so effectively and so heroically.

(They've expressed their gratitude to him, who they consider not only a former head of state, but a fellow farmer)

With celebrations from school children, with songs written specifically dealing with guinea worm and the Carter Center, and with tears of gratitude when I go there, often. They've made me chief for the village, honorary chief. They've given me and Rosalyn land on which we can graze our cattle in the future, and so forth. They do everything they can to honor us because of the good work that our volunteers and other staff have done in those villages. So it's a very gratifying and heart-breaking but also heart-warming experience.

 

 

Donald Hopkins, M.D., M.P.H.
Vice President, Health Programs
The Carter Center

After more than three decades, now, of war against guinea worm, we're very close to the end, having started with an estimated 3.5 million cases in 1986. This fight started actually in October, 1980. But an estimated 3.5 million cases in 1986 in 20 countries, we're now down as of 2011, to just over a thousand cases in only four countries.

In 2012, we expect to be even smaller than that. And so our estimation is that we're going to have only a few hundred cases, at most, in 2012.

We expect it is within the next year or two that we'll see the last case of guinea worm disease on earth, which would be a great milestone.

I've been interested in this disease since I was an undergraduate in college. But it was really when I became aware of the International Drinking Water Supply Sanitation Decade in 1980. That decade ran from 1981 to 1990, and one of its objectives was to bring clean drinking water to everybody on the earth that didn't then have it by the end of 1990.

Of course, getting clean drinking water to all of the world that didn't then have it by, in ten years, was a much bigger thing than getting rid of guinea worm disease, because guinea worm was only occuring in a subset of those villages that had poor drinking water. But we thought it would be, at most, a ten year, maybe 15 year, battle. I had no idea it would stretch out and take as long as it has, a little over 30 years.

There have been just lots of challenges. One of the biggest challenges in the beginning was that many people didn't know about this disease, many who knew about it didn't care about it. Because it wasn't creating political pressure. The people affected are in very remote rural areas, and it wasn't killing people. In addition to that, we had great difficulties in the beginning raising money, because many donors didn't think this was, didn't understand how important a problem this was. And then when we had donors, the areas that we need to reach are among the most remote, the poorest people, the most traditionalist people who have their own rationalizations for why they've had this disease. And so we've had to overcome and convince them that this parasite, for example, is coming from their drinking water, and then educate them about the ways in which they can protect themselves. And so we've been battling on several different fronts, all along.

Once we stop transmission through human beings, this parasite will be gone forever. It has to pass through human beings, there's a stage outside of humans in the water in this small water flea that it has to pass through, but it also has to pass through human beings once a year. And so once we stop transmission through humans, it will be gone forever.

Once we stop it in humans, it will be gone forever.

In areas where we've been able to stop transmission already, it's been very encouraging for the people themselves. Because this is a terrible infection, these worms coming out of people's bodies, paralyzing them, crippling them for weeks on end during the time when they need to farm, when children need to go to school. So when you take that away, children are able to go to school, education improves, people are able to farm, their agricultural productivity is improved, and the whole development of the area is improved.

(And as clean water is brought in, they are no longer afflicted with other diseases... Many improvements in communities occur as a result of getting rid of the guinea worm, in health and education and agriculture productivity)

The most important change, to me, is the change in mindset. Where people realize that this infection, which has been around so long, has been eradicated forever. And that they did it themselves, with a little bit of outside help, they did it themselves. Then they're encouraged to attack other problems by understanding them better.

(The Carter Center works with and through the ministries of health... A handful of people work on it in Atlanta, and then in each country there is a national coordinator, and most of the staff consist of village volunteers and their supervisors all the way up to the top levels of government)

In South Sudan after the civil war was settled in 2005, in 2006 when this program was gearing up, they had on the ground more than 20,000 people working in the guinea worm program. That number's less now as the villages afflicted have been reduced, but you're talking in the thousands.

South Sudan, now, where the stakes are highest, they started later than others because of this civil war, we have the most intensive amount of person-power on the ground working against these cases remaining.

(The Carter Center acts as external cheerleader and fundraiser for the countries, and provides technical assistance)

The most important [role of the Carter Center] was, in the beginning, especially, helping convince the world at every level, international level, national level, village level, that it was possible to get rid of this disease, and that it should be done.

In 1986, in April, we had, the Carter Center was mounting its first international meeting, meeting on international disease....

I was asked to do a keynote talk about health problems in third world countries...

I emphasized guinea worm disease as one of the diseases that we could do something about.

In April of '86 I made the presentation, the main keynote lecture... And then Dr. Peter Bourn, who had been Carter's health advisor in the White House, made the luncheon presentation. I loaned Peter, at his request, some of my slides about guinea worm disease, and so he made another presentation at lunch time showing slides of people with guinea worm disease. It began then.

(In Nov. '86 we asked President Carter to speak with the President of Pakistan about guinea worm disease, and that became the first country that the Carter Center agreed to assist to get ride of guinea worm disease)

Two things strike me when I go into these villages. I draw energy from these interactions with people. One is to see how difficult life is for people just because of where they were born, how little they have. But the second is to see how resilient they are and strong they are in body, mind and spirit. And that's encouraging. And it gives me energy to help them understand how to get rid of this terrible problem and improve their own lives.

If we can get people to filter their drinking water with a finely-woven cloth, with the nylon filters we give them, that will take care of guinea worm disease. It does not take care of all of the dirty water, because there are still viruses and bacteria in that water. But once the cycle of guinea worm disease transmission is interrupted, even if people keep drinking dirty water, they will not continue to get guinea worm disease. They will continue to get, or be at risk of, diarrheal diseases and all those other terrible things, but guinea worm, there's no way that guinea worm will come back. So the main challenge is to get rid of guinea worm disease, however you can, as fast as you can. The ideal way of getting rid of guinea worm disease is to help communities get clean drinking water. That will protect them against a lot of other things as well, but it's also slow, and it's expensive, and it's the most, it's the intervention that's most susceptible to political diversion.

Dr. Ruiz and I have been friends for many years. I began the guinea worm program when I was at CDC. And Dr. Ruiz was assigned to the guinea worm program about a year after a group of us started working on it at CDC. And he and I have worked together, now, more than 30 years on this problem. He is a very dedicated -- as passionate as I am about it.

President Carter is about 17 years older than I am, so whenever I think I'm getting tired, I just have to look to him to be encouraged.

From the beginning, when others were scornful of this disease, not just neglectful of it but scornful of it, he took up the cudgels for this, raised the money, brought it publicity, showed people that it could be eliminated, and hasn't turned back since.

It's been very expensive, it's taken a lot longer than we originally intended or expected, and in addition he has now created at least two clones of himself in Africa... Mali... Nigeria...

I'm pleased to have worked on the small pox program as well as the guinea worm eradication program, and if God gives me life I want to, with Ernesto, we're going to write up the story of this guinea worm eradication program, because many of the lessons I've spoken about briefly here need to be preserved for future generations. I came into guinea worm eradication not at all dissuaded by people who were saying it's wasn't important, it couldn't be done, because I had heard people say that about smallpox, and I saw that we were able to get rid of smallpox.

With the right kind of approach and perseverance, you can make these things happen.

Having worked on guinea worm eradication now, as I said, for more than 30 years, it will be, first of all, a relief, a great relief, to see this finally done. It will be just an enormous satisfaction, as well, to just think about the reduced suffering in the world, but also think about the change in the mindset of people in the villages....

Oh, man, yeah, and it's only been within the last few months that I've been willing to admit myself, or really feel, that we really are, now, finally very close. Because we had so many disappointments along the way. But it is, it is, it is close, now.

Between December 2011, January 2012, Sudan reported, South Sudan reported a total of three cases, all three of them contained. Compared to 13 cases the year before in those same two months. In February 2012 they reported zero cases in South Sudan. And in February 2011, a year ago, South Sudan reported 60 cases.

And so we're very close, now. And South Sudan, in 2011, reported 97 percent of all the guinea worm remaining in the world. So as South Sudan goes, so goes the world, so goes the world's guinea worms.

 

 

Ernesto Ruiz-Tiben, Ph.D.
Director, Guinea Worm Eradication Program
The Carter Center

These filters are essentially made from a piece of nylon cloth that's very tightly woven,

The water that people drink is usually so murky that they don't see what's in the water that they do drink, and as a result they unwittingly become infected with the parasite.

These tools are the simplest tools that we can use in a large scale, to provide filters to all of the households in villages that are affected, so that the whole family is protected by the filters.

This provides guinea worm free water. It doesn't provide pure water, or water that's bacteriologically and chemically safe... you can still get sick from it, but you won't get guinea worm.

We have to break the life-cycle of the parasite at some point, to make sure that others do not become infected from persons who have the disease at the moment.

It's a parasite of humans. And only humans. And that's one reason why we can eradicate it from the world, is because it cannot, since it's only a human parasite, it cannot come back from anywhere else to infect people and cause havoc again. Once transmission is interrupted in a place, it has nowhere to come back to people from. So it is important that we use these simple tools to try to interrupt transmission of the disease.

No one that has guinea worm disease once in his lifetime would ever want to have it again.

This parasite grows to, up to about a yard long, or a meter long.

This would be stretched out [inside the body], through the tissues on your leg or on your arm or wherever the worm is coming out from. Sometimes they wind themselves around the joints like the ankles or the knees.

It has to be pulled out. The whole purpose of the parasite is to expose itself to the outside environment so it can release the larvae in the water.

President Carter convinced DuPont to donate the monofilament which are the individual strands that make up this mesh filter, uniquely created for this campaign, they donated around $50 million over a ten year period [for the filters].

We're down to the last 1,000 or so cases.

(Four countries reported 1,058 cases in 2011, and 97 percent of the cases were in South Sudan)

(He started working on guinea worm at the CDC in Atlanta in early 1980s, then came to work at Carter Center in 1992)

When we began the campaign in the early 1980s, we knew of 20 countries that were affected by the disease, 17 of them in Africa, and three of them in Asia -- India, Pakistan, and later Yemen was also found to be affected by the disease.

Eradicating it is a long, complex process.

For this disease there is no curative drug, or vaccine. And people do not develop immunity to it. And one person can be infected repeatedly during the course of one year, and every year.

Trying to educate people in very remote, rural areas of Africa and Asia about our concepts of disease transmission, when they have had no education whatsoever and they believe either that the worms come with the rains so that they're born with it, or it's somebody else's in the community's curse to them, or that you get them because your ancestors that lives in ponds caused you to become infected. So overcoming those educational barriers has been a challenge.

So there have been many levels of complexity.

The women in the communities that more readily than others understand why this is being done and can relate, and also because they probably have more empathy towards people who are, who are suffering from the disease, and they, themselves, who are the farmers. Most of the time in Africa, 70 percent of the farmers are women. So they're the ones at greater risk of having themselves infected, or having their children infected with guinea worm disease.

If this campaign had not been undertaken back in the early 1980s, we estimate that there would have been, already -- some 79 million cases would have occurred since then, up to now. This campaign has prevented, averted, that many cases.

This disease is terrible, because it occurs among people who have been called, you know, the forgotten, this disease has been called the forgotten disease of forgotten people. And for good reason. It occurs in very remote rural areas, and people are usually totally disenfranchised, who are dependent on their ability to, as I said, do their farming on time when the rains come, so that they can grow the food they're going to eat the next year, this year. And take care of their livestock and repair their houses and go about the business of subsisting in very remote rural areas, with literally nothing. Because there's no infrastructure out there. No health clinics. Usually no schools. No anything. And so the people who are affected suffer because they don't have any medical care that they can access. The ones that suffer from guinea worms invariably develop severe secondary bacterial infections, which fester, and which take weeks on end for them to become well again and to be able to ambulate and become normal again. People can have worms come out repeatedly over many, many weeks.

So it's terribly painful, it incapacitates people, prevents them from doing any farming. If there are schools, it prevents children from going to schools....

So it has a whole set of ripple effects on communities that can be devastating.

Having those populations free of the disease is a great, gives us a great sense of satisfaction and pride. And not only for us at the Carter Center, but for the, for the programs, the international guinea worm programs...

Our role at the Carter Center is to provide assistance, both technical and financial assistance through those programs, to make things happen.

In 1986, President Carter agreed to have the Carter Center become the lead Non-Governmental Organization assisting the national eradication programs, to get the job done by providing financial and technical assistance, and he, himself, became the primary advocate for the eradication campaign. And without his commitment, personal commitment and institutional commitment, we would not have, we would not be here where we are at this time with the eradication campaign.

All of these methods or interventions, by themselves, had been shown to work. So they could be made to work at the small scale. A village or a few villages at a time. The question for us at the beginnings of the campaign was whether we could scale up the use of all these tools to a national level. And to make it work with the levels of rigor and perfection that are required to interrupt transmission of the disease. Because the goal here is zero cases, it's not reducing disease prevalence from a hundred cases to five cases and stopping there.

Not only that, but doing it worldwide. Everywhere. It has happened only once, with smallpox.

My goal, all along, has been to, my personal goal has been to leave the world a little bit better when I leave it than when I first found it.

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