BÖLËT MOUNA
'Sleeping sickness no more'
Inside Guinea's quest to eliminate sleeping sickness
JJune 2024, Dubreka, Guinea A snap rainstorm is pouring down on the corrugated tin roofs of the sleeping sickness hospital in Dubreka, Guinea, and temporary rapids are flowing through the front gate into the open-air complex. It is the rainy season in this city just north of Guinea’s capital, Conakry.
As nurses and doctors take cover, a woman runs through the gate. She deftly hops over the massive puddles, shielding her head with her plastic-wrapped medical records, and runs into a room where health workers are waiting out the storm.
Her name is Macire Sylla. She has been suffering for some time now. The rain pounds on the tin roof, creating a deafening roar as she explains her struggle of the past year.
Macire lives in Tobolon, not far away. A year ago, a team from the hospital came to her neighbourhood to test people for human African trypanosomiasis, also known as sleeping sickness – a nightmarish neglected tropical disease spread by the bite of tsetse flies that live in the mangroves that surround Dubreka and most of the Guinean coast.
Everyone in the village was given a rapid diagnostic test, and Macire initially tested positive for sleeping sickness; but when she was given a confirmatory test, it was negative. So she didn’t receive treatment at that time.
Over the course of the year, Macire began to feel worse – pain and aches, weakness, and extreme fatigue. She started to suspect that maybe she did have the disease after all. She knew from the hospital team that without treatment, most patients with sleeping sickness eventually die.
And that is how she ended up today at the ‘Trypano Centre’ in Dubreka.
As the rain abates, her blood was taken at the Trypano Centre’s laboratory, and while her results were being analysed, a team carried out simple clinical exams, to look for the neurological symptoms of sleeping sickness – one of the many unique features of this parasitic disease.
While the symptoms of the first stage of sleeping sickness can resemble malaria, with fever and pain, the parasite later invades the central nervous system. At this point, people develop neuropsychiatric symptoms such as sleep disruption, confusion, lethargy, aggression, and convulsions.
To test for these neurological signs of sleeping sickness, the team has Macire conduct a set of simple exercises: reach her hands out, hold a paper on the top of her hands, touch her nose. People with sleeping sickness often can’t pass these simple physical tests, but Macire is able to do almost everything. Perhaps she doesn’t have the disease after all.
Across the hospital grounds in the laboratory annex, Oumou Camara, the Diagnostic Manager at the National Programme for Neglected Tropical Diseases, sees a different story under a microscope. Despite having tested negative a year ago, today Macire’s blood sample was full of the Trypanosoma brucei gambiense parasites that cause sleeping sickness.
She was positive for sleeping sickness.
Next to Oumou, French researcher Dr Bruno Bucheton from the French National Research Institute for Sustainable Development (IRD – from the French Institut de Recherche pour le Développement), is nevertheless elated. Dr Bucheton, who has been in Guinea for 15 years working on sleeping sickness, sees the bright side.
‘This is great news – if this lady hadn’t returned, she might not have been diagnosed,’ said Dr Bucheton. ‘The disease would have continued to progress into a later stage, and if she was bitten by a tsetse fly, she should could have passed on the disease to someone else. Now we will be able to cure her. She will feel better – and her life will be saved.’
Macire is one of a rapidly dwindling number of sleeping sickness cases in the country because Guinea is on the cusp of eliminating the disease.
Macire is told she is positive for sleeping sickness
Macire is told she is positive for sleeping sickness.
OOn 30 January 2025, the World Health Organization (WHO) validated Guinea as having eliminated the disease as a public health problem, meaning the country now counts less than 1 case for every 10,000 people.
This is the first disease that the country can claim to have eliminated and a major milestone in the Africa-wide campaign to eliminate sleeping sickness. Historically, Guinea was the country most affected by sleeping sickness in West Africa, reporting a large number of cases of the gambiense strain of the disease, alongside the Democratic Republic of Congo (DRC), South Sudan, Angola, and Chad.
The National Sleeping Sickness Programme in Guinea and its national and international partners have used all the tools at their disposal to achieve this milestone – from the small ‘tiny traps’ that dot the mangrove coasts of Guinea to rapid diagnostic tests that allow the Programme to quickly identify patients.
Innovative research has been a hallmark of this successful elimination programme. Guinea was also a partner country for clinical trials led by the Drugs for Neglected Diseases initiative (DNDi) to develop innovative new treatments for sleeping sickness. This includes acoziborole – the one-dose cure that could be the key to eliminating the disease for good.
‘It’s the team that wins,’ said Professor Mamadou Camara, National Coordinator on Neglected Tropical Diseases (NTDs) in Guinea, who has dedicated most of his career to tackling sleeping sickness. He helped set up Guinea’s National Sleeping Sickness Programme in 2002 and has since created international research collaborations with 14 organizations around the world and in Africa.
"We have been able to achieve this thanks to research, innovation, and human perseverance. It’s the international community that wins. It’s the international community that is winning against a disease."
How did Guinea reach this milestone?
And importantly, how can Guinea take the next step
and finally eliminate the disease for good?
STEP 1
A unique foe – controlling the tsetse fly
TThe mangroves provide a livelihood for the hundreds of thousands of people who live in or alongside these wetlands. The channels that crisscross the brackish swamps are essential transport waterways, connecting remote communities that depend on fishing or cultivating the many riches of the mangrove.
But these same channels also act as ‘highways’ for the tstetse fly, according to Dr Bucheton, whose organization, the IRD, has supported the Guinean government’s ‘vector control’ programmes to control the tsetse fly.
Both male and female tsetse flies can transmit the disease. Many people are bitten and infected while traveling the mangroves in canoes or by foot. To control the flies, the Programme uses ‘tiny targets,’ or the ‘blue flags’ as they are known by the local populations. The flies are attracted to the blue (scientists don’t exactly know why).
While flying close to the water along the mangrove, they land on the flag where a dose of insecticide kills them in a matter of minutes. The National Programme sets up traps strategically, close to where humans farm, fish, and access the vast mangroves by boat. The idea is to break the contact between the vector, the fly, and the human host, so the teams focus on putting the flags in places where they know the flies are infections - where there have been recent cases of the disease.
They are helped along by the tsetse fly’s unique life cycle. Unlike other insects that release thousands of eggs, tsetse flies only produce a handful of larvae in their three-month lifespan. Females will fertilize only one egg at a time and feed the developing larvae milk in the uterus – a phenomenon that Dr Bucheton likens to breastfeeding.
Unlike other insects, the flies don’t lay their eggs in water where they can be eaten by predators – the mother gives birth to single pupa, which then burrows into the ground while it develops.
Setting up a 'pyramid' trap which captures live flies for research.
Setting up a 'pyramid' trap which captures live flies for research.
Because it makes so few larvae, it is possible to rid an infected tsetse fly population of the sleeping sickness parasite in a given area. But the ecosystem of the mangrove presents some particular challenges.
‘If we put them too low, when there is a higher tide there is a risk the trap can be destroyed or come loose because of the rising water. So, they set the traps when they know the tides will be at their highest,’ says Dr Bucheton. ‘But we still lose many traps – it’s a huge problem in the mangrove. Traps need to be constantly replaced – they get soaked in water; the wind destroys them.’
The village of Kéréba is a perfect example of the Programme’s success. Although the skyline of Conakry is visible from this tiny village, it is only reachable by boat. Kéréba is a temporary settlement where villagers ‘mine’ salt by digging trenches in the mangrove to collect tidal water. They then extract the salt from it through a laborious process of burning mangrove wood.
The Programme has been traveling the mangrove by boat to set up tiny targets for some time now in and around the community – and the work is paying off. Kéréba has had zero cases of sleeping sickness for two years now.
Tsetse fly control works.
Salt miners in the village of Kéréba
Salt miners in the village of Kéréba
STEP 2
Building trust
Back in Dubreka hospital, Macire’s familiarity with the disease is testament to the success the Guinean Sleeping Sickness Programme has had in raising awareness of sleeping sickness. That she willingly comes to the hospital is a clear sign of the trust it has built with local communities.
Since so much of the sleeping sickness work is built around research – from tsetse fly surveys to advanced treatment trials – ensuring the communities understand and appreciate the science has been a major focus.
Researchers found out the importance of this approach the hard way.
In 2014, Guinea – along with Liberia and Sierra Leone – was witness to the largest-ever outbreak of Ebola. After two years of this terrifying disease and over 11,000 deaths, the sleeping sickness elimination programme in Guinea was in tatters. About 10% of all villages in Guinea were affected by Ebola.
The outbreak created a massive loss of trust in the health system, often accusing the system of taking their children, their parents, their friends – never to be seen again.
‘We learned many lessons from Ebola because there was a breakdown in trust between the community and health workers,’ said Prof. Camara. Medical workers were sometimes attacked and gravely injured, including members of Prof. Camara’s team like Mamadou Léno (see video interview above).
Prof Camara’s team would have to build this trust again in the ashes of Ebola.
One approach has been to work with community radio stations, like the Rural Radio of Forécariah, with which the Programme has worked extensively to broadcast sensitization and awareness messages. The station was started during the Ebola outbreak in 2015. ‘Ebola was striking us at our hearts,’ said Mamadou Cissé, the head of the station. ‘We needed a trustworthy channel to communicate to rural populations.’
The Programme now sends representatives to the Rural Radio to announce that they are coming to a given area to test for sleeping sickness. They run interactive programmes to educate people and explain the intentions of the team – for example, why they are taking blood and what they will do with the samples they collect.
Dr Mariame Camara interviewed by the 'Rural Radio' of Forécariah
Dr Mariame Camara interviewed by the “Rural Radio” of Forécariah
Step 3
Going from door to door
The small village of Douprou sits by one of the many rivers that drain the mangroves near the town of Boffa. Along with Dubreka and Forécariah, Boffa is one of the three main areas affected by sleeping sickness in Guinea.
Today, a Sleeping Sickness Programme team – responsible for prospection médicale, or a mass screening – is in Douprou to test the entire village. Although it is only a short drive from the main road linking up Guinea’s major coastal towns, Douprou is relatively remote, accessible only by a dirt road that can be treacherous to travel during Guinea’s rainy season.
In a scene that is repeated throughout sleeping sickness-endemic regions of West and Central Africa, a ‘mobile’ screening team sets up under the shade of a tree in the middle of the village, with the entire town called out to this field laboratory to carry out a set of tests for sleeping sickness. This scene – in many ways the hallmark image of the fight against sleeping sickness – was invented by a French military physician, Colonel Eugène Jamot, in the early part of the 20th century in the European colonies.
Today’s screening was organized in Douprou because a case was detected here back in 2023, so the team has come back to see if there are any more. On average, there are about two screenings a year.
To start, the screening team records all the names of the villagers who are asked to line up at the camp. Everyone has a blood sample taken from the fingertip. The analysis is done on the spot – in a ‘field lab’, a collection of old wooden tables with lab equipment set on top. If the fingertip blood is positive, the person is asked to stay a little longer while a second sample of blood is taken from a vein for deeper examination and questions are asked about any possible symptoms.
On site, the veinous blood is put in a centrifuge and diluted in order to perform a parasitology exam. Patients that are positive to this second test are then referred for treatment. Countless lives have been saved this way in sleeping sickness-endemic countries, thanks as well to new rapid diagnostic tests that give results in 15 minutes and allow onsite detection of sleeping sickness.
'Around 2012-2013, we had more than 50 cases in this area,' said Oumou Camara, the Diagnostic Manager at the National Programme for Neglected Tropical Diseases, Guinea. 'Now we are looking for the last cases. In 2024 we didn’t record any more cases in Boffa. We are really on track to eliminating this disease.'
Once the mobile team leaves, entomologists from the sleeping sickness programme will come and set up tiny traps around the village – following the daily path of the patient to ensure that the flies that live in the areas where they likely caught the disease cannot transmit it to others.
Research collaborations
At the heart of Guinea’s sprawling capital, Conakry, a state-of-the-art research centre is leading on another research collaboration that is shining important light on testing for sleeping sickness in Guinea, and across the Continent.
The ultra-modern Pasteur Laboratory has its campus at the Gamal Abdel Nasser University of Conakry. The laboratory is part of the Institut Pasteur de Guinée (IPG), which was founded in the wake of the Ebola epidemic in 2015. Part of the venerable French not-for-profit Institut Pasteur Network, the IPG has been a key partner of the Guinea Sleeping Sickness National Programme.
The Institut Pasteur has been leading important studies around asymptomatic patients, or patients that have sleeping sickness but do not display any symptoms. The ‘Trypskin’ project, led by the Institut Pasteur along with DNDi and the IRD, is testing skin samples to see if sleeping sickness parasites persist in the skin and are being ‘missed’ by blood tests, especially for asymptomatic patients.
‘We realized that certain people did not have parasites in the blood, so weren’t treated,’ said Dr Bucheton. ‘This study should help us to better identify people with the infection, which will have a very significant impact on transmission and eventually reaching zero cases of sleeping sickness,' he said.
Ibrahima with his father, Issiaga, in the village of Tady on the Sierra Leone border. Ibrahima fell sick with sleeping sickness after accompanying his dad on many trips to the mangrove. For years, Issiaga struggled to find out what was wrong with his child until the Sleeping Sickness Programme visited the village in 2021. Ibrahima was diagnosed for sleeping sickness and received treatment. Today, he is healthy, and his family has high hopes for him.
Ibrahima with his father, Issiaga, in the village of Tady on the Sierra Leone border. Ibrahima fell sick with sleeping sickness after accompanying his dad on many trips to the mangrove. For years, Issiaga struggled to find out what was wrong with his child until the Sleeping Sickness Programme visited the village in 2021. Ibrahima was diagnosed for sleeping sickness and received treatment. Today, he is healthy, and his family has high hopes for him.
Step 4
Innovation to go the last mile in sleeping sickness elimination in Guinea… and all of Africa
Guinea’s announcement that it eliminated sleeping sickness as a public health problem is an incredible step, but as anyone working on the disease anywhere in the world will tell you - this kind of victory does not always stand the test of time. The WHO validation is an acknowledgement of decades of incredible work and perseverance.
But patients like Macire show that the work is not yet over.
As is the case throughout Africa, sleeping sickness is a cyclical disease, often resurging as a result of political or societal upheaval. In Guinea, there were thousands of cases in the 1960s, but control programmes brought them down. Another rise in cases in the 1990s was tackled by Prof. Camara’s Sleeping Sickness Programme, but then disaster struck with the Ebola outbreak.
The validation of elimination by WHO this year is testament to the role science, research, and partnership have played in bringing cases back down after Ebola. But another dose of innovation will be needed to go the last mile in sustainable elimination and treatments developed by the Drugs for Neglected Diseases initiative (DNDi) will play an important role in going this critical – and difficult – last mile.
Taking a step back, the story of sleeping sickness treatment is well known in the tropical disease community. Toxic, ineffective, and often deadly treatments were the norm until recently, when DNDi developed and introduced safe and effective treatments – treatments that are saving lives in Guinea today.
The most revolutionary of these treatments is acoziborole, a single dose sleeping sickness medication seen by many experts as the critical tool needed to sustainably eliminate sleeping sickness, by allowing teams to quickly treat small, isolated outbreaks of the disease. Results from a trial that was conducted in Guinea and the DRC were published in 2022 and showed success rates of up to 95% for this one-dose cure for sleeping sickness. At the same time, a clinical trial is ongoing in Guinea and the DRC to assess acoziborole in children.
‘We are really looking forward to acoziborole. The trials have shown that patients recover very quickly from sleeping sickness – doctors were amazed to see this with a single dose of pills,’ said Dr Mariame Camara, DNDi Investigator, National Sleeping Sickness Programme. Dr Camara has worked extensively on DNDi’s clinical trials in Guinea, drawing from her long experience treating sleeping sickness patients in Guinea over the past years.
Pan-African clinical trials
DNDi has been working with partners in Guinea since 2016, with clinical trials starting in 2018.
The ‘Centre Trypano’ hospital in Dubreka served as the main centre for DNDi’s sleeping sickness clinical trials in the country, recruiting about 300 participants. To support the research, DNDi renovated hospital facilities, drawing on its rich experience running clinical studies in the DRC.
Dr Wilfried Mutombo, the Head of Clinical Operations for DNDi in the DRC, worked hand in hand with Dr Camara and the rest of the team in Guinea. This pan-African approach linking Dr Wilfried’s team in DRC and the Guinea team was an integral part of the DNDi story in Guinea.
‘All our sites in Guinea were rehabilitated by DNDi along the lines of what we’ve done in DRC – renovating the labs, patient rooms, and offices, and installing internet connection,’ said Dr Wilfried. There was a huge exchange between the site of Masi Manimba, DNDi’s most important sleeping sickness site in the DRC, and Dubreka.’
The DNDi clinical trials were the first in which most of the Guinean researchers had participated. ‘The trials played an important role in building treatment capacity in the country,’ Dr Camara said.
Making medical history
In many ways acoziborole is the last piece of the elimination puzzle, fitting in with effective vector control, community sensitization, and easy diagnosis done at the village level. Dr Camara looks forward to the day both diagnosis and treatment can be given on the spot: ‘A patient only needs to receive a positive rapid diagnostic test in a community screening, and we can give them a single-dose of treatment with acoziborole.’
DNDi is working with industry giant Sanofi to register acoziborole. The teams are hoping that the drug can be in the hands of health workers in Guinea, the DRC, and other sleeping sickness endemic countries by 2027, so African countries can work together to finally put the threat of sleeping sickness to bed.
‘Acoziborole is a revolution. It can be given very easily to large number of patients, especially those who are in advanced stages. This drug will help us go the next step in completely eliminating sleeping sickness from Guinea.’
Dr Mariame Camara at the port of Dubreka
Dr Mariame Camara at the port of Dubreka
After her diagnosis back in Dubreka hospital, Macire returned to her room at the opposite end of the hospital. With rain still pouring down outside, she solemnly laid out a prayer rug and began offering prayers.
'She is praying,’ said Dr Mamadou Baiolo Diallo, one of the sleeping sickness doctors at Dubreka hospital. 'Not because she is scared, but she is happy. She will receive treatment – she trusts the treatment, and she knows that she will be cured. Her life will be saved.'
Macire praying in her hospital room, giving thanks that she will receive treatment for sleeping sickness.
Macire praying in her hospital room, giving thanks that she will receive treatment for sleeping sickness.
The Drugs for Neglected Diseases initiative (DNDi) is an international non-profit research and development organization that discovers, develops, and delivers safe, effective, and affordable treatments for neglected patients.
Photos: Brent Stirton/Getty Images for DNDi