Waking from sleeping sickness in the DRC

April 12, 2017 by Lesley Reed

A close-up of an older woman with short hair looking into the camera.

The effects of sleeping sickness show on the face of 66-year-old Octavie. The disease, which is fatal if untreated, threatens 30 million people, mostly in Africa. Photo: PATH/Georgina Goodwin.

One of the world’s deadliest diseases may be eliminated through new tools and a commitment from the Democratic Republic of the Congo.

Marthine clearly loves Octavie. Even now, when his wife of 48 years moves like a sleepwalker, he dotes on her. He encourages her to eat the food he’s brought to the hospital and adjusts her clothes to protect her dignity. When she emerges from her lethargy to muster a smile, he beams.

Octavie has sleeping sickness, or human African trypanosomiasis (HAT). She and Marthine are from Bandundu Province in the Democratic Republic of the Congo (DRC), which has the highest incidence of the disease in the world. Months or possibly years ago, a tsetse fly bit Octavie and infected her with the HAT parasite.

Now she is at Roi Baudouin Hospital in Kinshasa, the country’s capital, being treated for the advanced stage of the disease. For seven days in a row, she will receive intravenous infusions to kill the parasites that have entered her brain. Without the complicated treatment, she will eventually fall into a coma and die.

An older man helps an older woman straighten up her clothing.

Marthine made sure Octavie was respectable for photos. The couple have been married for 48 years. Photo: PATH/Georgina Goodwin.

Neglected, fatal, and on the run

Sleeping sickness is one of the most neglected—and fatal—diseases in the world. Nearly 85 percent of cases occur in the DRC, but efforts over the last decade reduced the number to fewer than 2,500 in 2015. Now, thanks to a global pledge to control, eliminate, or eradicate 17 neglected tropical diseases by 2020, its days may be numbered.

The DRC’s Ministry of Health is developing a national strategic plan to eliminate the disease with support from a consortium of partners, including the Belgian Institute of Tropical Medicine, the Bill & Melinda Gates Foundation, the Drugs for Neglected Diseases Initiative, FIND, PATH, and the World Health Organization. The key is to stop transmission of the disease, but that requires treating people with the disease during the first phase, when it’s much harder to diagnose.

In fact, it can take many years for symptoms to develop, and when they do, the symptoms are hard to distinguish from other diseases. Fever and headache can be misdiagnosed as malaria. Itching can be mistaken for filariasis, caused by roundworms. Yet it is during this phase that the disease is both easier to cure and when the parasite is transmitted to others via the bite of the tsetse fly.

In the second, advanced phase, the parasite passes through the blood-brain barrier and attacks the central nervous system. That’s when the telling symptoms emerge: sleepiness, confusion, difficulty walking and talking.

A woman gazes down upon a young girl. Both are reclining on a bed.

Both 17-year-old Nkwimi and her 2-year-old daughter Gracia have advanced sleeping sickness. The disease has made it impossible for the young woman to mother her daughter. “I feel weak,” she says. “I want to keep sleeping.” Photo: PATH/Georgina Goodwin.

Going mobile to catch a disease

The DRC’s plan to eliminate sleeping sickness relies on a new rapid diagnostic test, treatment, and tsetse fly traps; an awareness-raising campaign; and digital technologies to help find and confirm cases. A cadre of “mini-mobile teams” is going door-to-door, screening more than 3 million people with the rapid test with the goal of finding and treating sleeping sickness before it spreads.

Villages in Bandundu Province are so remote that the teams need to use motorcycles and canoes to reach them. They’re so isolated, in fact, that no one is sure how many there are.

To find these villages, high-resolution satellite imagery and GPS mapping, developed by Digital Globe and the University of California at Los Angeles, are being used to identify every settlement in Bandundu Province. The detailed mapping will help the program estimate the population at risk and determine where to roll out mass screening and treatment. And because it can be hard to distinguish the HAT parasite, lab workers in the field will soon be able to connect their cell phones to a microscope and take a video, which will be reviewed for quality assurance.

A deadly cure

Marthine first realized something was wrong with Octavie when he noticed her talking more than usual and wandering aimlessly. Then her movements began to slow, her speech slurred, and sleep became irresistible.

When asked what Octavie was like in the past, Marthine, who is a furniture maker, says, “She was active! She worked beside me making wooden spoons to sell.”

A close-up of an older woman smiling gently at the camera. An older man smiles broadly in the background.

A rare smile from Octavie gives a window into her true self. If all goes well, she will not only be cured of the deadly infection, but both she and the DRC will be free of sleeping sickness once and for all. Photo: PATH/Georgina Goodwin.

Not long ago, the only available treatment for the advanced phase of sleeping sickness was derived from arsenic. Nurse Esther Madada, who cares for Octavie and the other patients in the sleeping sickness ward, remembers well the anxiety she felt administering the treatment. It was so toxic that one out of ten patients died from it. But without treatment, death was almost certain.

While the newer intravenous regimen is difficult to give, the side effects are fewer and the results better. She feels certain that Octavie will be fine, and her confidence has rubbed off on Marthine.

“You see a very big change in their behavior,” Esther says. “When a patient is cured, it is a joy for me.”

Follow-through is key

Of course, ridding the DRC and all of Africa of sleeping sickness would be an even greater joy—but that will require persistence.

Active screening efforts reduced sleeping sickness cases before, but once the disease was brought under control, surveillance efforts were eased. As a result, the disease returned with a vengeance. During the last big epidemic, in 1998, more than 38,000 Africans were infected.

“It is important to stay on until the end,” says Dr. Crispin Lumbala, director of the DRC’s National Program against Sleeping Sickness. “This is the moment.”

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