Doctors have nearly eradicated a 'terrifying' disease — without a cure or vaccine

As It Happens6:26Doctors have nearly eradicated a 'terrifying' disease — without a cure or vaccine

When doctors first started trying to eradicate Guinea worm disease nearly four decades ago, more than 3.5 million people were infected. Last year, that number dropped to 13.

Now The Carter Center, which has spearheaded the fight against the disease, says it's in the final — and, perhaps most difficult — stage of completely eradicating it in humans.

If all goes according to plan, it will be the second human illness to be eradicated after smallpox, and the first to be eradicated without a vaccine or a cure.

"To me, the most important thing is to realize how many fewer people are suffering from this disease than were suffering before — because it's a terrible disease," Dr. Donald R. Hopkins, a special advisor for Guinea worm eradication at The Carter Center, told As It Happens host Nil Köksal. 

The disease has already been eliminated in 17 countries. In 2022, six human cases were reported in Chad, five in South Sudan, one in Ethiopia, and one in the Central African Republic.

What is it, and how do you get it?

Guinea worm disease is a parasitic infection that mostly affects some of the world's poorest people. Hopkins called it a "terrifying phenomenon."

People are often infected via drinking water contaminated with nearly-microscopic fleas carrying Guinea worm larvae. The larvae hatch in the body. After the Guinea worms mate, the male dies. 

The host won't know they're infected until a year later, when they develop an intensely painful blister, from which the adult female worm emerges.

During that time, a person may experience fever, nausea, diarrhea and vomiting. And if the wound becomes infected, people can become disabled, or in rare cases, die. 

These worms can be up to a metre long, and take anywhere from a couple of days to several weeks to remove. To relieve the burning pain, people will often submerge the infected area in water.

"The worm at that stage is a long uterus packed with hundreds of thousands of microscopic larvae. Those immature forms of the worm are then discharged in the water, where they're taken up by small water fleas," Hopkins said. "And the cycle continues."

There's no cure, but the disease is almost entirely preventable by filtering water at home using a cloth.

The problem, Hopkins says, is helping people make the connection between the water and the worms, given the long delay between infection and symptoms.

"People often don't connect the act of drinking contaminated water with this worm that they have. And people have imagined all sorts of other reasons to explain the presence of these worms," he said, including witchcraft, curses, or simply shrugging it off as a natural phenomenon. 

'A sea of misery' that impacts livelihoods

Hopkins, who lives in Chicago, is the former vice-president and director of health programs at The Carter Center, a non-governmental organization founded by former U.S. president Jimmy Carter and his wife, Eleanor Rosalynn Carter.

He has been involved in Guinea worm eradication since The Carter Center program began in 1986, and has travelled to rural communities all over Africa to treat and educate people. 

In those early days, he says, it wasn't uncommon for more than 60 per cent of a community to have the disease all at once. 

It can be incredibly debilitating, he said. He had a patient who had a blister in his mouth that made it impossible to eat. He's met small children who were crying in pain, terrified by what was happening to their bodies.

"And in a few extraordinary instances, we've had people who've had dozens of worms emerge at the same time and just get overwhelmed by the secondary infections," he said. 

"It's just a sea of misery. And again, knowing that that's preventable makes it all the more painful as an outsider to just witness that."

It's kept children from school, he said. And because it's seasonal disease, it would often strike just as people were getting ready to plant or harvest crops. 

"So it pounds at the basic building blocks of rural communities — those being health, agriculture and education," he said.

Building trust and making progress

Hopkins says he and his colleagues have faced many obstacles in the fight against Guinea worm disease, including from potential donors and fellow scientists.

"It was basically a disease of rural, poor, neglected populations. Even in the countries where the infection occurred, it was uncommon in urban areas … and so it was not a priority," he said.

Over the last 37 years, The Carter Center has worked to educate people about the connection between drinking water and Guinea worm disease, showing them how to filter their water at home using cloths. 

They have also helped improve access to safe water by building borehole wells, because water coming from underground cannot be infected by people with emerging worms.

The centre has also partnered with the chemical company BASF, which donates large quantities of Abate, a larvicide that kills the worms in the water, but has no ill-effect on humans or wildlife.

"The biggest challenge is just helping people to understand that they don't have to continue suffering from this infection," Hopkins said.

"Once you then gain their trust by respecting them and showing empathy, indicating that you're there to help them … then things begin to change. And after that it begins to snowball, so to speak."

The final stretch may be a long road

But the hardest part may still be to come.

For a disease to be considered eradicated by the World Health Organization, there has to be no reported cases for at least three years.

Adam Weiss, the current director of The Carter Center's Guinea worm eradication program, told The Associated Press that "it's going to be a slow roll to get to zero."

That's because the places where it still exists are the hardest for doctors and volunteers to reach because of local insecurity and conflict.

"If we take our foot off of the gas in terms of trying to accelerate getting to zero and providing support to those communities, there's no question that you're going to see a surge in Guinea worm," Weiss said.

"We're continuing to make progress, even if it is not as fast as we all want it to be, but that progress continues."