By Sharon Atieno

Medical clinic at Yalikombo village

Europe’s drug regulatory agency recently approved for use fexinidazole– the first treatment for sleeping sickness that solely relies on pills. The new drug cures all the stages of the tsetse fly transmitted disease within 10 days.

The protozoan parasites injected as the flies suck blood, pave their way into the brain causing those infected to be mad. Victims suffering from Africa tryposonomiasis, commonly referred to as sleeping sickness usually suffer from hallucinations and rage; beating their children and attacking family members. In worst case scenarios, victims fall into a coma then die.

An estimated 65 million people live in regions in west and central Africa where the most common strain of sleeping sickness, Trypanosoma brucei gambiense, circulates. A less common form circulates in southern Africa, and is still dependent on the old treatment.

Genese Luyantiku talking with Dr. Willy

Genese Luyantiku Sindani is a 38 year old farmer who resides in Masi Manimba, Democratic Republic of Congo (DRC) with her four children, in 2011 she was diagnosed with the disease. She had headaches, backaches and fever. “I started hitting my children and I couldn’t control it,” she said.  She has a hazy memory of those times. She sought treatment at Masi Manimba hospital where doctors did blood tests and a lumbur puncture before enrolling her in the fexinidazole clinical trials. “I am cured now,” she said.

“Genese was able to have two children after her treatment,” said Dr Willy Kuziena, Investigator for the fexi trials at Masi Manimba, who treated her through the fexi 004 clinical trials. “This is important, because HAT can cause infertility and sterility in women of child-bearing age.”

Charnelle with her family speaking to a doctor

“I lost weight, I had a fever, I started talking to myself. I was hot, I couldn’t do anything. Then I started vomiting and couldn’t eat I lost lots of weight. My neighbours complained that I was rude to people,” describes Charnelle Mafuta, 23, who is also a survivor. She was near delirious: singing, rolling on the floor and dancing.

Villagers get infected in their fields or while fishing. Already in 2018, Lwano village has seen 5 cases of sleeping sickness, according to co-investigator for the fexinidazole trials in Lwano, Dr Nkieri Matheu.

A doctor examining Alexis Mukwedi

”I know about this sickness and I’m happy to receive treatment,” says Alexis Mukwedi, a fisherman and a farmer after testing positive with the Card Agglutination Test for Trypanosomiasis (CATT). He was given more blood tests and his cervical lymph nodes were examined and found to be swollen. He was visibly tired at the mobile clinic. The patient had complained about nervous tics, fatigue and seemed very frightened.

Drugs for Neglected Diseases initiative (DNDi)-supported mobile screening team for sleeping sickness in Yalikombo – an isolated village along the Congo river, is surrounded by marshland, which are the breeding ground for tsetse flies. The mobile team can screen up to 400 people a day. The mobile clinics have made villagers more aware of the disease and readily accept treatment.

Though the treatment has proven to be quite effective, it has not been without challenges for these rural folks.

Pablo Loela at the treatment centre

“I’m the one that provides food for my nine children being in the hospital means I can’t provide for them,” states 50 year old Pablo Loela, subsistence farmer. He was on his fifth day of treatment but hadn’t eaten for three days, since his family stopped bringing in food after the first few days.

”Keeping patients in the hospital for 10 days is difficult we just can’t afford food. We can only give them drugs, not food,” Sister Beatrice Bone, the Head Administrator of the hospital laments. “The families need to do this, and sometimes they come from 40 kilometres away. We need drugs and we need food – everything falls on us for these patients.”

The current intravenous drug, eflornithine, must be given over many days with blood fluids that weigh about 56 kilograms. Melarsoprol, the intravenous treatment that was used years back contains an arsenic derivative that not only corroded veins but also triggered convulsions and killed 5 percent of the patients who got it.

Registration at medical screening camp at Lwano village

The approval cost US $63 million and involved clinical trials including 750 patients in Congo and the Central African Republic. Two million villagers were screened.

Fexinidazole was reformulated in 2009 by Sanofi after the German drug company that created it in the 1980s abandoned it.