How a country wiped out sleeping sickness – the ‘frightening’ disease that requires a deadly drug to treat

Before you know it you are awake all night, chucking books across rooms and laughing uncontrollably. This is what happens when sleeping sickness is left untreated, and before it inevitably kills you. The disease was once rampant across Guinea and required a deadly arsenic drug to treat, but with a medical miracle the illness was declared eliminated from the country at the end of January.

Dr Wilfriend Mutombo used to be the only doctor in a village of 11,000 ridden with sleeping sickness infections. He would have to inject the terrifying arsenic drug, called melarsoprol, into the veins of patients to try save them from certain death. The drug itself was so dangerous it killed one in 20 people who took it.

‘Just thinking of melarsoprol gave us shivers. The injections were painful,’ Mutombo told Metro. He is now the head of clinical operations for Drugs and Neglected Diseases initiative (DNDi) in the Democratic Republic of the Congo (DRC). ‘In addition to the pain, I was more afraid of the famous and terrible reaction to the drug,’ he said.

‘Unfortunately I lost two patients this way when I worked in the village. ‘Both were in their twenties. Each time, it was a painful experience for me as a doctor: I had to endure the look in the family’s eyes that meant, without saying it, “You killed our son”.

‘Patients don’t come to hospital to die, they come to be cured or to get relief. ‘Fortunately what I just described is history now.’. Sleeping sickness, medically known as Human African trypanosomiasis, is a parasite spread through the bite of tsetse flies, who thrived in the swampy mangrove of Guinea’s coast.

The historic disease, first picked up in colonial times, resurged in the 1990s with deadly results in Guinea and the DRC. ‘Sleeping sickness is quite frightening to see,’ James Arkinstall, Communications and Advocacy Director at DNDi told Metro. ‘People think they are cursed. They become quite scared of it.

‘If you don’t get treatment, it is almost always fatal. You will eventually end up falling into a coma.’. Arkinstall added: ‘When the tsetse fly bites, you get infected. If symptoms appear it is easy to confuse with malaria. ‘After a while it crosses the blood-brain barrier and then symptoms become more specific.

‘You become very aggressive. You don’t sleep at night and start sleeping during the day. ‘We met one person who was shaking and laughing uncontrollably.’. The disease ‘decimated populations in the 1960s’, with the toxic melarsoprol drug being all doctor’s had to combat the illness until 2009.

It was then doctors replaced melarsoprol with a new drug called NECT. The safer treatment, however, was cumbersome, heavy and required ten days in hospital attached to a drip. Society was beginning to get to grips with sleeping sickness. Researchers were experimenting with catching infected tsetse flies and doctors were having success testing for the disease.

Then came Ebola. Guinea was at the epicentre of the deadly disease’s outbreak in West Africa from 2013 and over 3,000 people died from the highly contagious illness. Arkinstall said: ‘People were burning down clinics, there was so little trust in the health system.

‘All of the health system was pretty much put on freeze. Nobody was going to the health centre anymore. Doctors and nurses were getting attacked.’. As cases of one illness skyrocketed, so did cases of sleeping sickness. But of the chaos of Ebola came a ray of hope.

Scientists noticed that areas which persisted with an innovative new fly trapping technique had far more success keeping caseloads of sleeping sickness down. The blue ‘flag’ traps attract the tsetse flies close to waterline and kill them within minutes.

Nearly 15,000 of these traps have now been deployed annually in high-risk areas since 2016. Just as fly trapping was taking off, a miracle new drug also entered the scene. Called fexinidazole, the medicine had been sitting untouched in a drug library for decades when it was rediscovered by DNDi scientists.

Requiring only a course of pills over ten days outside of hospital, trials showed it was 91% effective and it was approved by the European Medicines Agency in 2018. A highly effective public testing campaign also helped to keep on top of new outbreaks.

‘Doctors will alert the village that they are going to test in that area and everyone will turn up,’ Arkinstall said. ‘People are willing to get tested. It is a well oiled machine. ‘Although it is a scary disease people now know the treatment is there and it is free.’.

These three-pronged strategy led to the moment Guineans had been waiting for. On January 29 2025, the country announced sleeping sickness had been eliminated as a public health problem. This means the country now sees less than 1 case per 10,000 people in at-risk areas. As few as 12 cases were diagnosed in 2024.