How a rustic worn out sleeping sickness – the disease where a deadly drug is the cure | News World

Doctors have battled the mysterious and terrifying illness for a long time (Picture: Brent Stirton/Getty Images for DNDi)

Before you already know it you might be awake all night, chucking books across rooms and laughing uncontrollably.

That 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 top of January.

Dr Wilfriend Mutombo was once the one doctor in a village of 11,000 ridden with sleeping sickness infections.

He would need to inject the terrifying arsenic drug, called melarsoprol, into the veins of patients to try save them from certain death.

Vases of melarsoprol (or arsobal)
Arsenic drug melarsoprol would kill one in twenty patients used on (Picture: Xavier Vahed-DNDi)
Dr Mariame Camara, DNDi Investigator, National Sleeping Sickness Program and Dr Wilfried Mutombo, the Head of Clinical Operations for DNDi in the DRC, with acoziborole pills at the Dubreka Clinical Trial site
Dr Wilfried Mutumbo needed to inject patients with the arsenic drug (Picture: Brrent Stirton/Getty Images for DNDI.)

The drug itself was so dangerous it killed one in 20 individuals who took it.

‘Just considering of melarsoprol gave us shivers. The injections were painful,’ Mutombo told Metro. He’s now the top of clinical operations for Drugs and Neglected Diseases initiative (DNDi) within the Democratic Republic of the Congo (DRC).

‘Along with the pain, I used to be more afraid of the famous and terrible response to the drug,’ he said.

‘Unfortunately I lost two patients this manner after I worked within the village.

‘Each were of their twenties. Every time, it was a painful experience for me as a physician: I needed to endure the look within the family’s eyes that meant, without saying it, “You killed our son”.

‘Patients don’t come to hospital to die, they arrive to be cured or to get relief.

‘Fortunately what I just described is history now.’

The Diagnostic Manager at the National Programme of Neglected Tropical Diseases, Guinea, is examining blood samples taken from people suspected of having sleeping sickness. Today a Sleeping Sickness Programme team is in in Douprou to test the entire village for sleeping sickness, following the identification of a case
A screening camp for sleeping sickness in Guinea (Picture: Brent Stirton/Getty Images for DNDI.)

Sleeping sickness, medically referred to as Human African trypanosomiasis, is a parasite spread through the bite of tsetse flies, who thrived within the swampy mangrove of Guinea’s coast.

The historic disease, first picked up in colonial times, resurged within the Nineteen Nineties with deadly leads to Guinea and the DRC.

‘Sleeping sickness is sort of frightening to see,’ James Arkinstall, Communications and Advocacy Director at DNDi told Metro.

‘People think they’re cursed. They change into quite afraid of it.

‘If you happen to don’t get treatment, it is nearly at all times fatal. You’ll eventually find yourself falling right into a coma.’

Arkinstall added: ‘When the tsetse fly bites, you get infected. If symptoms appear it is simple to confuse with malaria.

‘After some time it crosses the blood-brain barrier after which symptoms change into more specific.

‘You change into very aggressive. You don’t sleep at night and begin sleeping throughout the day.

A box of NECT being transported on boat
The heavy and tricky drug NECT being transported for sleeping sickness treatment (Picture: Xavier Vahed-DNDi)

‘We met one one that was shaking and laughing uncontrollably.’

The disease ‘decimated populations within the Sixties’, with the toxic melarsoprol drug being all doctor’s needed to combat the illness until 2009.

It was then doctors replaced melarsoprol with a brand new drug called NECT. The safer treatment, nonetheless, was cumbersome, heavy and required ten days in hospital attached to a drip.

Society was starting to familiarize yourself with sleeping sickness. Researchers were experimenting with catching infected tsetse flies and doctors were having success testing for the disease.

Then got here Ebola.

Guinea was on 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 within the health system.

A lone tiny trap sways in the breeze near Kéréba. In the distance the city of Conakry -but this settlement is so remote it is only reachable by boat. “The bugs are disappearing since we received the tiny targets,” villagers said. In the salt mining camp of Kéréba. The skyline of Conakry is visible from the tiny settlement of Kéréba but it is only reachable by boat from the port of Dubreka. This small, temporary settlement is emblematic of the challenges the Sleeping Sickness Programme of Guinea and the IRD faced in reaching small, often mobile groups of people moving in and out of the mangrove.
A tsetse ‘flag’ fly trap sways within the breeze (Picture: Brent Stirton/Getty Images)

‘All the health system was just about placed on freeze. No person was going to the health centre anymore. Doctors and nurses were getting attacked.’

As cases of 1 illness skyrocketed, so did cases of sleeping sickness.

But of the chaos of Ebola got here a ray of hope.

Scientists noticed that areas which endured with an revolutionary latest fly trapping technique had way more success keeping caseloads of sleeping sickness down.

The blue ‘flag’ traps attract the tsetse flies near waterline and kill them inside minutes.

Nearly 15,000 of those traps have now been deployed annually in high-risk areas since 2016.

Just as fly trapping was taking off, a miracle latest drug also entered the scene.

Setting up tiny traps in a coastal mangrove channel. On the far left Angela Ceballos Caro, PhD student at Centro Nacional de Microbiología (CNM) in Madrid, Spain, who is visiting Guinea to conduct research on sleeping sickness and other vector-borne diseases. In the beige hat, Bruno Bucheton Research Fellow, Research Institute for Development, with the grey hat Dr Moīse Kagbadouno, National Sleeping Sickness Program Entomologist, Guinea, and in the blue hat Jean-Mathieu Bart, Research Fellow, Research Institute for Development. Vector control of the tsetse fly is one of the main pillars of the Guinean sleeping sickness elimination programme and a huge factor in the national success story of combatting sleeping sickness.
The tiny traps are arrange in a coastal mangrove channel (Picture Brrent Stirton/Getty Images for DNDI.)
a pill of fexinidazole
Tablets of Fexinidazole, a drug that was utilized in the DNDi-FEX-07-HAT clinical study in Malawi. (Picture: Lameck Ododo-DNDi)

Called fexinidazole, the drugs had been sitting untouched in a drug library for a long time 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 maintain on top of recent outbreaks.

‘Doctors will alert the village that they will test in that area and everybody will turn up,’ Arkinstall said.

‘Persons are willing to get tested. It’s a well oiled machine.

‘Even though it is a scary disease people now know the treatment is there and it’s 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.

The Diagnostic Manager at the National Programme of Neglected Tropical Diseases, Guinea, is examining blood samples taken from people suspected of having sleeping sickness. Today a Sleeping Sickness Programme team is in in Douprou to test the entire village for sleeping sickness, following the identification of a case
A whole village in Douprou being tested for sleeping sickness (Picture Brrent Stirton/Getty Images for DNDI.)

This implies the country now sees lower than 1 case per 10,000 people in at-risk areas. As few as 12 cases were diagnosed in 2024.

‘We’re delighted and share the enjoyment of Guinea. This elimination is a victory of collaboration,’ said Mutombo of the DNDi, which works with Guinea’s National Control Program, the WHO and other agencies.

UK International Aid contributed over £53 million to DNDi from 2019 to support their work combatting nine neglected diseases, including their fight against sleeping sickness.

The fight continues to be not over, nonetheless. The disease has still not gone away within the DRC and complacency could see infections rise again.

The DNDi does have one final secret weapon: a brand new drug called acoziborole.

Dr Wilfried Mutombo, the Head of Clinical Operations for DNDi in the DRC, with acoziborole pills at the Dubreka Clinical Trial site in Guinea
Dr Wilfried Mutumbo with a brand latest drug, acoziborole, to fight sleeping sickness (Picture: Brrent Stirton/Getty Images for DNDI.)

A far cry from the times of arsenic injections, this may be a one off pill would treat sleeping sickness for good.

Acoziborole may very well be in use as soon as 2026 and can be ‘perfect’ for treating any latest cases quickly.

Researchers now dream of stopping transmission of this terrifying disease for good by 2030.

They’re closer to this goal now greater than ever.

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