Last Friday evening, listeners of one of France’s most venerable radio stations were treated to an hour-long tribute to the Congolese and international researchers that have dedicated their lives to ending sleeping sickness.
Veteran health reporter Tara Schlegel from France Culture accompanied our NTD Director Dr Nathalie Strub-Wourgaft to the Democratic Republic of Congo (DRC) to witness how the first all-oral treatment for sleeping sickness, fexinidazole, is being rolled out in the country. Her trip, from the capital Kinshasa to a remote rural hospital, was also a trip down Congo’s tumultuous past, where outbreaks of this deadly parasitic disease have ebbed and flowed over time.
Now, as Tara explains, we are finally on the verge of potentially eliminating this disease. The documentary is available in its entirety here.
France Culture is a well-known public radio and news outlet that has built an excellent reputation by broadcasting detailed and well-researched stories on important yet-sometimes overlooked topics. Topics such as neglected diseases. ‘Patients often have no political clout. Affected communities cannot afford treatment and are therefore of little interest to clinical research’, Tara writes in her account of the trip.
Tara landed in Kinshasa on April 11 and started by visiting our DRC regional office, a ‘pretty white house’, with a ‘hand-painted logo’ on the wall, surrounded by ‘blue lizards with red head and tails’, and a ‘large red iron gate; that the driver needs to honk at in order to open’. There she met Dr Wilfried Mutombo Kalonji, our Sleeping Sickness Trial Coordinator, whom she described in colorful terms: ‘a rugby physique, a love of French songs, and a passion for the political history of the Congo and the struggle for independence.’
Dr Wilfried helped Tara understand the nightmare reputation that sleeping sickness has in his country. Speaking with Tara, he said ‘Some sleep all day. Some have problems with language, behavior, walking. Some also become very aggressive, one spat on my face, another hit the nurse. But I’m not angry: this is because of the disease. They are my friends.‘ If left untreated, patients with sleeping sickness will die.
She also met the legendary Dr Victor Kande: who has devoted his entire career to the fight against sleeping sickness. He described how patients were treated with melarsoprol, the only treatment available to physicians at the time. Derived from arsenic, melarsoprol is so toxic it killed one in 20 patients: ‘At that time we had up to ten or twenty thousand patients… can you imagine when 5% of them died?’
Tara then accompanied Dr Nathalie, DNDi’s DRC Head of Office Chirac Bulanga Milemba, and Dr Wilfried to Bandundu province, one of the regions most affected by sleeping sickness. The team visited the hospital in Baundundu city, where DNDi, Sanofi, and various international and Congolese partners carried crucial clinical trials to develop fexinidazole, the simple oral pill that is revolutionizing the treatment of the disease.
Near the village of Mushie, Tara met a mobile screening unit – these health workers travel deep into the most remote areas of the DRC to test entire villages for sleeping sickness. ‘This is a very difficult job,’ explained Alexandre Mbukatoto, the unit head. ‘Each month we spend 20 days far from our family and our children, always on the road. Some of us got divorced. The roads are not in good condition, we usually sleep in a villager’s house, or a class room, or a church.‘ But this job is crucial : this screening is necessary to eliminate the last reservoirs of the disease.
As Dr Nathalie explains in the documentary, ‘the journey from a promising drug candidate to obtaining the authorization to commercialize it took almost ten years.’ And our partnerships are going ever further, as we are developing acoziborole, a new, single-dose, easy to administer pill that holds tremendous promises.
If you speak French – or are learning – please discover more about this fantastic journey by listening to this fabulous audio-documentary.
Photo credit: Nathalie Strub-Wourgaft-DNDi, T.S. – Radio France, Sandrine Francine Ngalula-DNDi