Eye on the cure

The voice belongs to Dr. Frank Richards with Atlanta’s Carter Center and comes from inside a hut made from eucalyptus logs and plastered with cow dung.

Richards beams as he emerges from the tiny health center, deep in the Horn of Africa. He carries a blue and green ledger containing the names of everyone in this remote Ethiopian village and the dates they took medications.

Newit Bekele, the village chairman, approaches wearing an AK-47 over his shoulder, an automatic pistol in his waistband and a serious expression on his face.

Sudan, which can be glimpsed from nearby hilltops, was mired not long ago in civil war, and the threat of violence is part of the rolling landscape.

Richards, a 32-year veteran of hunting down and fighting illnesses around the world, is the Carter Center’s field general in the campaign to do what has been done only once so far in human history, eradicate a disease. River blindness, a scourge more devastating than mere loss of sight, is his target. It’s a quixotic quest that he pursues in far-flung places with multisyllabic names.

He has a reputation for challenging the assumptions of the international groups, governments and nonprofits that are his allies in this fight. Not all are in agreement with his strategy. Richards knows opinions speak loudest when backed by facts, and he came 20 miles down this dirt road to arm himself with a few of those to support his next arguments. It’s something he does often. A calendar hangs on the wall of his Dunwoody home so his family can keep up with him. It shows him in some far corner of the world about twice a month.

In October, Richards travelled to this distant village, Shimelegara, to learn if World Health Organization maps showing the limits of river blindness's range were accurate and if government health stations such as this one could be counted on to regularly distribute medicine to contain it.
The theory is simple: Regular doses of a drug stop the spread and speed the death of the parasite that causes river blindness. Richards believes multiple doses a year over the next decade can wipe the disease from the face of the earth.

The implementation is complex: The campaign can be crippled by wars, graft, isolation, mobile populations, lack of infrastructure or money. Smallpox was eradicated in the face of the same problems. If Richards, 59, can succeed with his plan for Ethiopia and the rest of Africa, river blindness will follow.

The lives of 120 million Africans depend on the outcome.

Heady stuff for a man who dreamed of being a photographer.

2
Finding the enemy
Richards, the son of a St. Louis surgeon, saw his first case of river blindness in Central America. It was 1987, shortly after he married his sweetheart, Sherri Poindexter, and the Centers for Disease Control and Prevention sent them to Guatemala, where Richards fought malaria and researched a vaccine to prevent river blindness.

He had learned Spanish well enough that he was beginning to dream in it, but Spanish was useless in the green volcanic hills of one Guatemalan coffee plantation. The coffee pickers there still spoke a Mayan dialect. The short Indian woman in front of him told Richards through a translator what river blindness was doing to her. He could see it. As she spoke, she was scratching her skin to the point of bleeding.

“She was suffering as I talked to her,” Richards said. “Her skin was extremely deformed. She appeared much older, her skin was thickened and wrinkled.”

The disease is spread by tiny black flies the size of the lead of a sharpened pencil that breed in fast-flowing rivers.

When they feed on human blood, the flies pick up embryonic parasites from an infected person and inject them into another. The embryos grow into threadlike worms more than a foot in length, lodge in body tissues and breed. Each female will release more than 100 new microscopic embryos per day, which crawl through the body just under the top layers of skin, ready to be picked up by another fly. A sufferer may have tens of thousands of embryonic worms beneath their skin at once. When the embryos begin to die, they irritate the skin resulting in extreme itching.

The parasites make their way to the eye and then die, scarring the tissues and causing the crippling blindness that gives the disease its name. Darkness comes not quickly, but in a long twilight ending in night.

At the time, the only cure for river blindness was a medicine that killed the worms but could also kill the patient.

“The cure was worse than the disease,” Richards said.

When people called to ask for help, he had to tell them there was none.

Then Richards began crossing paths with medical teams that were trying an experimental drug under development by Merck called ivermectin, later given the trade name Mectizan. It kills the embryos in the skin and keeps the worms from reproducing in a human host.

At a Christmas party he struck up a conversation with another American researcher, Dr. Richard Collins, who knew about Mectizan. After his third-or-so drink, Collins bragged that he could rid Guatemala of river blindness and the suffering with 12 guys, three cars and a steady supply of the drug.

Richards wanted in.

3
From philosopher to medical student
Richards realized the scale of his mistake as the alcohol-infused fuzz cleared from his brain in the New England winter. It was his freshman year at Williams College in 1971. He grabbed his coat and ran across the snow-covered campus in Massachusetts for what he hoped would still be his first final exam in his declared major, chemistry.

The momentum for this rolling disaster started during a test-cramming session the night before with a roommate saying, “I gotta have a drink.” Richards joined in until the wee hours. He woke up to a panic-dream scenario of having slept 30 minutes past the 10 a.m. start of the test.

It had not been a good semester. He had already dropped out of calculus, failing. As he raced to his final, his thoughts were: “My parents are going to kill me,” Richards said.

He arrived at the classroom breathless, made his excuses and pleaded.

“I was ready to kiss (the professor’s) feet when he said I could take the exam,” he said.

Chemistry was an odd choice for a major. In high school, Richards had excelled in history and literature and other humanities.

“The courses I remember my senior year in high school are in philosophy and a course they offered in science fiction. I don’t remember anything positive about science courses,” Richards said.

He played competitive tennis, held a student government post, took guitar lessons (he still plays and loves rock and jazz) and had garage-band jam sessions with friends. He had a juvenile’s sense of adventure, had fallen in love with scuba diving and photography, learning in the muddy water of flooded Missouri rock quarries with his dad. They later dove in the Caribbean, where Richard’s mother Ruth recalls her son mixed easily with the locals. He talked of becoming a photographer for National Geographic.

“I think he even submitted pictures once,” said his sister Susan Windham-Bannister.

It was a practical matter that brought Richards to think about medicine. He started wondering his senior year in high school how he was going to make a living. “Growing up I was surrounded by physicians. That was in the back of my mind.”

Frank Sr. and Ruth Richards did not dictate to their children what to become. But they set high standards for Frank and his sister, Susan: doctor, lawyer, teacher — whatever you do, do it well.

“The only requirement we had of them is, we said you cannot be a bum. You have no reason to not make something of your life,” Frank Sr. said.

Richards learned from his freshman mistakes at Williams. He steadied and applied himself and gained a studious reputation.

“He made being a nerd kind of cool,” said classmate Walter Clark, who also became a doctor.

Sometime during his freshman year, after he negotiated a successful path through his first disasters, he sent his father a brochure listing the courses he was taking.

It surprised his dad.

“He never showed any interest in medicine,” said Frank Sr.

“I used to take him to the hospital and stuff on rounds. But he was never the kid that dressed up like a doctor, and I assumed he was going to be a lawyer or teacher or something else, but not a doctor.”

On the last page of the brochure, Richards had written, "Dear Dad, I think I want to go into medicine. But I don't plan on being a surgeon, and I plan to make a difference," Frank Sr. recalls.

4
Breaking through the barriers
Richards' parents knew something about making a difference, and he credits much of his success to their examples.

Frank Sr. attended historically black Talladega College in Alabama in the 1940s, where he met future wife Ruth Gordon from New Jersey. She was on her way to earning a master’s degree in social work. He went on to Howard University medical school, became a surgeon and then joined Homer G. Phillips Hospital in St. Louis, the largest African-American teaching hospital in the U.S. After four years, in 1950, he joined the Air Force, which was removing segregationist barriers. Frank Sr., Ruth and Sue were stationed in Germany, where Frank Jr. was born.

There, Frank Sr. crossed racial barriers and treated whites. He recalls the base commander’s wife, a Southerner, complaining about him, a black man, who was about to perform surgery on her. The commander told his wife, “This is the base surgeon, and this is the way it’s going to be.”

“I operated on her and she turned out to be the most grateful person,” Frank Sr. recalled.

After his tour ended, Frank Sr. returned to St. Louis and became the chief resident at Homer Phillips, which had been desegregated by law in 1955, though the reality would take years to follow. Richards remembers living across the street from a hospital for whites that did not accept African-American patients or his father as a physician. But he grew up in a supportive, community atmosphere with doctors and role models such as Dr. Jerome Williams, who took a leading role in desegregating St. Louis.

Frank Sr. recalled the days as “living in two separate countries,” and Ruth said both of her children gained from those experiences — character and abilities to move across barriers and solve problems. The family moved into an integrated neighborhood as the social world began opening up in 1966.

From his mother, who had worked with the disadvantaged and poor, Frank Sr. said his son learned compassion.

Sue said, “Their expectations of us were very much about giving back ... We would use our skills and talents whatever they were to give back. There was no compromise on that.”

Richards put the lessons from his family to practice in college. He and his friend Clark took part in a student takeover of the student snack bar after another African-American student got insulted there.

The Biafra war and famine broke out in Nigeria, and the newspapers were filled with images of reed-thin children starving in Africa. To bring attention to the horror, Richards and Clark built a large cross on the student green and took turns splayed out upon it as if crucified.

“Man, I was up there for a number hours,” Clark said, and Richards had his turn, too. “We just wanted to do something to raise awareness.”

The spirit of the age faded, but not for Richards.

"I've been disappointed between what we talked about, changing the world, and actually doing something," Richards said.


5
Quest for adventure
After Williams, Richards attended the medical school at Cornell University, where his life veered toward changing the world under the spell of Dr. Ben Kean, a flamboyant Indiana Jones-ish character and internationally renowned expert in tropical medicine.

“He would often begin lectures with something like, “Once, when I was treating the Shah of Iran ...” Richards recalled. “He often said good teaching is good drama.”

And he would bring in for students caipirinhas — the powerful alcoholic lime and sugar-based national drink of Brazil. Richards said he knew within three lectures what he wanted to do. He had finally found a calling that matched his sense of adventure with medicine.

He went on a student fellowship to the interior of Brazil to do disease research with “some guy named Cuba Cuba” in isolated towns where armed men lined up at bars like the Old West. After returning home and graduating, he completed a residency in pediatrics at Children’s Hospital of Los Angeles, and the CDC hired him in 1982. He won a highly sought-after position on the Epidemic Intelligence Service, which drops teams of experts into places around the world on short-term investigations of disease outbreaks. Controlling diseases has been his career.

“My brother and I have both gone into fields that focus on life sciences,” observes his sister, Sue, president and CEO of the Massachusetts Life Sciences Center, a quasi-public agency spending $1 billion to create jobs and perform research in high-tech medical fields. “I sit in my corporate offices and my brother sits in the dust. His is the tougher work in many regards.

“But I think he has found a way to blend these loves, on rivers in jungles. I think since he wasn’t able to become a photojournalist, he became the subject of a National Geographic article.”

Late last year, after giving a lecture on disease eradication at the American Society of Tropical Medicine and Hygiene, Richards talked to a staff member there about the lure of not just controlling river blindness, but killing it.

“Only one eradication program has ever succeeded. Even D.A. Henderson (an architect of smallpox eradication) said about smallpox, ‘We were lucky.’ I recognize that it is inherently risky and the chances of failure are great.”

And he talked about the allure of being able to pull off the impossible.

"There is an attraction to heroic endeavors that seems built into our DNA. I think we are programmed to want to accomplish a heroic act. And eliminating a disease has the feeling of a great act."


6
Right man, right time
Dr. Donald Hopkins, the vice president and director of health programs at the Carter Center, knew Richard's expertise and hired him in 2005 to lead its world campaign against river blindness, one of six diseases the center's experts believe can be eradicated.

Richards can communicate as comfortably with a village health worker as he does with the minister of health of a nation, a key skill in an effort that requires as much diplomacy as medical expertise, Hopkins said. He crosses cultural lines easily.

President Jimmy Carter, who knows a little about international diplomacy and has traveled with Richards, thinks he is the right guy to accomplish the monumental task.

“He is one of my heroes,” Carter says.

With the help of allies such as the Lion’s Club International, other health agencies and six countries in Central and South America, Richards led the Carter Center’s campaign to eradicate river blindness in the Western Hemisphere to a tantalizingly close conclusion. It has been reduced from six countries to two small areas in the Amazon jungle.

Richards knows killing the last 5 percent of a disease is tougher than killing the first 95 percent.

“It’s pretty beat up right now. Oncho (onchocerciasis, the medical name for riverblindness) is on the ropes. What does a fighter do if the opponent is on the ropes? You make your final effort for the knockout.”

Last July, the Carter Center declared its goal was to carry the strategy to Ethiopia and the three other African countries with the highest incidence of river blindness. That will be the springboard to the other 26 or so sub-Saharan African countries where it is found. But the ongoing efforts in the Western Hemisphere to eradicate river blindness barely qualify as a warm-up for Africa. The disease established a small beachhead in Central and South America when it arrived in imported slaves, and at its height it threatened only half a million people.

In Africa, about 120 million are threatened. An estimated 20 million carry the parasites.

“It’s a hostile court for us,” Richards said.

River blindness has taken the sight of more than 300,000 people and degraded the vision of 800,000. There are more strains of the tiny biting black flies that are more efficient at spreading the disease than American varieties, more rivers for them to breed in and untold tens of thousands of isolated villages like Shimelegara. There are the human problems — civil wars such as the one that broke out in December in South Sudan — that stop drug deliveries and turn refugees into disease carriers. Health infrastructure breaks down and health experts flee. There is another disease in some countries called Loa loa, which complicates river blindness treatment if a patient suffers from both.

The drug Mectizan has proven so far to be the mythical silver bullet. It can stop the symptoms quickly by killing the parasitic embryos. Given often enough — two to four times a year — it can speed the death of the adult worms. The disease has not found a way around the drug, yet.

But Merck, which has pledged to donate enough Mectizan to get the job done, might have to build a new factory, if every country adopts Richards’ preferred strategy. He is pushing for victims to take Mectizan twice or more a year to eliminate the disease. An adult may have to take multiple tablets for each treatment.

“If everyone gets their act together and we decide to go to twice a year, we will need more than 1 billion tablets,” said Dr. Adrian Hopkins at Atlanta’s Task Force for Global Health. He serves as the go-between for Merck and the dozen or so nonprofits who deliver most of the tablets through programs like the Carter Center’s.

Delivering that many tablets and setting up the health infrastructure will cost money that is not there, he added.


7
A new frontier
Maps put together by the World Health Organization's African Programme for Onchocerciasis Control (APOC) show river blindness simply stopping at Ethiopia's border with Sudan, near Shimelegara.

Richards, who holds a seat on the steering committee of APOC, and the Carter Center team drove into the hills north from the village to see if there were any natural barriers on the border that might block the flight of the black flies. They can travel maybe 500 miles on the wind. Someone had sent him a fuzzy photo of a long ridge along the border that could be a barrier, if it were high enough.

From a hilltop, a global positioning finder in hand and peering at the ridge across a long rolling valley into Sudan, Richards and Carter Center entomologist Aseged Taye figured the ridge was no barrier.

“I kept wanting to see a sheer mountain range. That is nothing more than hill,” Richards says. “The flies could negotiate that easily.”

With firsthand evidence, he will return to APOC to make yet one more argument, this one about revising the map. He has been pushing the committee for years to adopt his strategy of giving Mectizan twice, or three or four times a year to eliminate the disease.

“It worked in the Americas,” he said.

Not everyone agrees with Richards’ push for at least two treatments per patient per year because of the cost, associated difficulties in delivery and questions of necessity.

“Once a year treatment has succeeded in some areas,” Dr. Adrian Hopkins noted.

During his four-day trek across far northwest Ethiopia last October, Richards sought more evidence for his strategy. He asked health officials in regional offices to villages if they can deliver the drug twice a year. The locals tell Richards yes, despite mud roads that turn to sloughs in rainy season, despite unbridged streams that become torrents in these hills, twice a year can be done and would be welcomed.

“It drives me crazy when APOC says the people can’t do twice a year when everybody from the kebele (village) to the regional level says it can be done,” Richards says.

“The people on the ground need to put their two cents worth in, which is my job,” he says.

Richard’s powers of persuasion will be tested.

Dr. Adrian Hopkins, who served in the position Richards now holds on APOC, said there was early concern that Richards’ combative, argumentative nature would not put him in good stead with the committee.

“When I started working with Frank in about 1996, he didn’t sit down and get dictated to,” Dr. Adrian Hopkins said. “He is probably listened to now a lot more than he was 10 years ago,” he said. “He is a little more diplomatic now than he used to be.”

The data Richards collects in Shimelegara, a collection of some 100 or more huts with conical grass roofs far from the nearest power line or paved road, encourages him to keep pushing.

The blue and green ledger he carried out of the health station showed the names of every man woman and child in the village inked in neat lines. Beside each name is a date when each took their Mectizan. The health worker can explain every instance of why some didn’t take it: This woman was pregnant, that man was away working. But a high enough percentage of them got the drug to effectively stop anyone from showing symptoms. So it has gone for years in this little faraway corner of the world that reinvigorates the hope of Richards and put the smile on his face.

Some days, he wakes up thinking river blindness will be eradicated by 2025, one of many target dates that have been set for declaring river blindness dead.

He is, he says, an optimist.

Other days, the scientist part of his brain that sticks to measurable facts and calculated probabilities kicks in and he thinks, maybe not.

But he never concedes. He compares himself to the literary character Don Quixote, wandering the Spanish countryside and tilting at windmills.

“This has been my crusade. ‘The Man of La Mancha.’”

HOW WE GOT THE STORY
Thanks to the Centers for Disease Control and Prevention, Atlanta has attracted heavy hitters in the work to improve health around the world. Dr. Frank Richards spearheads the Carter Center's campaign to eradicate river blindness and is one of the people making a difference in poor countries around the globe. I met Richards several years ago while covering nonprofits, but it wasn't until the birth of Personal Journeys 18 months ago that I had the forum to tell his story. I met with Richards several times during a six-month period in 2013; and then in October, I traveled with Richards to the far borders of Ethiopia for a firsthand look at the challenges he faces there. I also spoke with world medical experts, Richards' family and friends, listened to recordings of speeches Richards delivered and read hundreds of pages of studies on river blindness. It's the kind of in-depth story made possible by the AJC's commitment to spotlight the lives of extraordinary people who help define our region.

Christopher Quinn
Features editor
personaljourneys@ajc.com

About the reporter and photographer

Christopher Quinn joined the AJC in 1999 after working 11 years for newspapers in Henderson, N.C., and Winston-Salem, N.C. He's won awards for his work including investigative awards from the Institute of Southern Studies and the North Carolina Press Association and awards for his courtroom coverage from the Society of Professional Journalists and the North Carolina Bar. In his career, he covered has business, courts, local governments, Georgia's General Assembly and religion and nonprofits, which is where the idea for this story was born. He moved often as a child and young adult, but Atlanta has always been one of the few constants in his life because one set of grandparents lived off Ponce de Leon Avenue. He remembers reading the AJC comics as a child Sunday mornings while lying on heart-of-pine floors in Cedartown, Ga., one of many stops in his life. When the AJC hired him in 1999, it was like coming home. He now is the editor for the Living section.