Witchcraft, Sleeping Sickness & a Passion for Medicine; the Remarkable Life of Dr Victor Kande

WEM founder Mark Hannaford interviews Ilan Moss the maker of a remarkable film - A doctor’s dream: A pill for sleeping sickness

Winner at Health for All Film Festival

Dr. Victor Kande Betu Kumesu is a Congolese doctor who has spent the last 40 years of his life working to combat sleeping sickness and led clinical trials for fexinidazole, the first oral-only drug that is expected to accelerate the elimination of the disease in Sub-Saharan Africa. As the former director of the DRC’s sleeping sickness program, Dr. Kande spent decades treating patients with sleeping sickness when the only available drug was melarsoprol, an older, arsenic-based medicine that kills one in every 20 patients. . Frustrated by the lack of medicines and refusing to accept that melarsoprol was the only option, Dr. Kande partnered with Médecins Sans Frontières (MSF) and their newly formed Drugs for Neglected Diseases Initiative (DNDi) to research better sleeping sickness treatments, which led to a 15-year collaboration and clinical trials for a new drug. When DNDi identified the drug fexinidazole as a promising candidate, Dr Kande led the clinical trials needed to test the drug and championed what would become a revolutionary treatment. Compared to the previous injectable drug, fexinidazole has lower mortality rates and can be administered more easily and rapidly, even in rural settings. It can treat both stages of the disease and eliminates the need for a painful spinal tap to see how far the disease has progressed.

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Dr. Kande served as Principal Investigator from 2012-2017 and oversaw the screening of two million people to recruit participants. He enabled the training of health personnel and ensured that the trials met strict international standards. Fexinidazole was approved for use last November, and with about 65 million people in sub-Saharan Africa at risk, it has the potential to save many lives and even to eliminate sleeping sickness altogether. Fexinidazole and its development would not have been possible without the vital contributions, resilience, determination and vision of Dr Kande.

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'By the time the infection had invaded Ange Bukabau's central nervous system and begun to affect her brain, her family didn't know what to do with her. She was acting erratic, out of control.

"I was going crazy," says Bukabau, 32, who makes her living as a vendor in a small town in the Democratic Republic of the Congo, about 200 miles east of the capital, Kinshasa.

Her family members were frightened — and convinced it was witchcraft. Maybe she had sought a charm to attract a rich man and ended up cursed. "They worried I was a danger to my children, so they took them both away," she recalls. "I was alone."

What neither she nor her family nor the nurse she had seen had realized was that she had contracted African sleeping sickness — a parasitic disease that, if left untreated, essentially drives people mad before killing them. Happily, Bukabau made it to a hospital just in time and was one of the first patients to be treated with fexinidazole, the first treatment for sleeping sickness that relies on pills alone. On Friday, it earned approval from Europe's drug regulatory agency, paving the way for its use in DRC and across east, central and southern Africa, where the disease occurs, by mid-2019.

Sustained efforts to cure the