A doctor's dream

Currently about 65 million people are at risk of sleeping sickness in rural areas of sub-Saharan Africa. After the tsetse fly takes a blood meal and transmits the parasite that causes sleeping sickness, people experience fever and chills – symptoms that are often mistaken for malaria.

Patients enter the second, deadly stage of the disease when the parasites cross over into the central nervous system. Patients then suffer from terrifying neuropsychiatric symptoms, including aggression, psychosis, and a debilitating disruption of sleep patterns. Without treatment, most patients will die.

Historical accounts of the DRC are full of lurid descriptions of sleeping sickness and its symptoms. Colonial records talk about entire regions emptied out because of tsetse flies. Local village legends talk of sorcery and black magic, because the disease leads to such dramatic changes in the behaviour of their loved ones.

While records exist of sleeping sickness in early African civilizations, the violent changes brought on by colonialism sparked the first large-scale outbreaks at the end of the 19th century. Up to 500,000 died in one outbreak in the Belgian Congo in the 1890s, and 200,000 in British-controlled Uganda died from sleeping sickness.

In response, colonial authorities in the most hard-hit countries began long-term campaigns to eliminate the disease. European researchers crisscrossed the Congo while French “mobile teams” penetrated deep into the forests of Cameroon, pioneering the “Jamot Method” of case detection and treatment.

By the 1960s this approach succeeded in reducing the number of cases to below 5,000 per year. But independence led to the end of international aid. A lack of resources meant greatly reduced screening and tsetse fly control. Sleeping sickness cases began to come back.

The 1990s saw increased war and conflict in Sudan and the DRC. After years of neglect since the 1960s, sleeping sickness epidemics broke out in these countries, made worse by massive population displacement, poverty and violence.

By the 2000s the global community stepped up. The World Health Organization (WHO) signed donation agreements with pharmaceutical companies such as Aventis (later Sanofi) and Bayer to access treatments and control the disease. International aid began to flow again. The number of reported cases dropped below 10,000 for the first time in decades. By 2017, only 1447 cases were reported to the WHO.

Excitement is now growing that elimination of sleeping sickness is in sight.

On the frontlines of clinical research

Masi Manimba

Isangi wasn’t the only remote site for sleeping sickness research in Congo. A number of hospitals, once places where people suffered from toxic treatments, became centres for clinical research – an almost improbable transformation. In order to run clinical trials in these areas, DNDi brought them up to international standards of clinical research, installing lab equipment, solar panels, refurbishing clinics– even setting up an internet connection.

One DNDi site is so associated with sleeping sickness that the town it is located in is named after the disease.

Masi Manimba, located in the Bandundu region, means “the place where people sleep” in the local Kikongo language, and locals are sure that this is because of sleeping sickness. People are bitten by tsetse flies working in the fields or tending to their fish farms which are found in the rolling valleys of the region.

Lab technician Leon Katunda works at the DNDi ward at the Masi Manimba General Reference Hospital, which has become a flagship site for DNDi clinical trials in the country. He has worked in sleeping sickness for 16 years, starting off in the mobile teams that go out to remote villages to test for sleeping sickness.

Today Leon is enrolling two patients into DNDi clinical trials. They were brought to the trial site by the mobile teams, and sit in the spacious DNDi ward, located behind the hospital.

But first they must undergo another medical process that has become deeply associated with sleeping sickness: the spinal tap. To see if a patient has progressed to the second stage of sleeping sickness, doctors must extract their cerebrospinal fluid to check if parasites have entered the central nervous system. “We feel bad doing something that hurts our patients,” said Leon as he gently prepared a patient. “But we explain to the patients that without the lumbar punctures, we cannot treat them.”

Both patients grimace as Leon expertly inserts a spinal tap into their lower back – without anaesthesia. But they are brave, showing almost little pain. Leon collects the fluid from the tap.

The samples are then analysed by the clinical team. Dr Willy Kuziena, Investigator for the trials at Masi Manimba, oversees the operation. The samples are examined under microscopes with the aid of specialized software and a tablet that can take photos. The imagery can then be sent using the site’s internet connection.

Dr Willy has dedicated years of his life to developing fexinidazole and he couldn’t be happier.

“Many patients don’t want to go to the hospital because they fear leaving their fields for too long,” he says. “Fexinidazole would be a huge improvement because we could treat patients in their health zones and nurses don’t need specialized training.”

This was the “second revolution” that doctors needed, after NECT.

Bandundu

Bandundu Hospital hosts another DNDi site in the DRC, located in Bandundu on the Kwango river. Dr Hélène Mahenzi is the trial investigator and has been managing DNDi’s studies for six years. Around 160 people have been recruited by her team – she is proud of this achievement, especially in an area where clinical trials are unknown and capacity was limited.

Today she is examining a patient that wasn’t included in the trial. The patient, Jonathan Kidima is a student and is 24 years old. The DNDi ward admits other non-clinical patients as well. Because Jonathan is in the second stage, he will receive NECT – the standard of care at the time.

When night falls it is time to give Jonathan his nightly infusion. Sitting by Jonathan’s bedside is his mother, Mama Philomene. She brought her son to Bandundu hospital more than 60km away from their village.

This is her first child to get sleeping sickness. “He has been sick for seven months – he sleeps a lot, gets angry – he even hits his friends,” she said. “He stopped working in the classroom and he stopped showing respect for his father and mother.”

“It is difficult to be here – my children are alone in the village now,” she adds.

Dr Hélène observes the treatment from afar. The sun has set and she is tired after a long day.

“NECT is extremely effective, but it's so hard to administer night and day – it's also hard for these families,” Dr Hélène says as her team administers the drugs. “Fexinidazole will be a great improvement.”