This weeks featured project : Médecins Sans Frontières Australia

April 2006

Sleeping sickness, the hidden killer

MSF has been running a trypanosomiasis (sleeping sickness) program since 2004 in Isangi, in Oriental Province of Democratic Republic of Congo (DRC). The program aims to halt transmission of the disease by working on vector control and assures an early diagnosis by actively assessing the population at risk. Clinical trials of a new and less toxic treatment have also been undertaken by MSF on a new, less harmful, drug for severley affected patients.

What is Sleeping Sickness

Read an MSF patient's story: "I never realised before that I was so ill"

"How to recognise a tsetse fly? It is between 6 and 13 mm long. Its proboscis is held horizontally, extending forwards. Its wings at rest are crossed on its back like the two blades of a pair of scissors. The tsetse fly lives on the edges of rivers in marshy areas and in undergrowth close to stretches of water." This is the detailed description (plus design) given in the information booklet published by the Congolese Ministry of Health and other partners involved in the sleeping sickness campaign.

The tsetse fly, or "glossina", is the vector responsible for transmitting African Human Trypanosomiasis (AHT – or sleeping sickness) in Central and West Africa. When they sting human beings some glossinas transmit a parasite, called trypanosome, which causes the disease, which, unless treated, is invariable lethal.

Active and passive screening
During an emergency intervention undertaken in 2003, MSF discovered a rural area seriously affected by the disease in the Orientale Province of the Democratic Republic of Congo (DRC): Isangi. Located where the Congo and the Lomami Rivers meet, Isangi hosts the huge MSF Trypanosomiasis programme launched by MSF in 2004, which includes screening the local population and treatment provision to as many people as possible. Three of the four health districts (Isangi, Yabaondo and Yahisuli) in this large territory (comprising 60 health areas and about 300,000 inhabitants) are struggling to cope with a fully-fledged epidemic, primarily in contiguous areas close to the Lomami and Congo Rivers.

The AHT campaign is first and foremost aimed at screening the people affected. "A distinction is made between two types of screening: active and passive", explains Bertrand Draguez, MSF medical coordinator for the Great Lakes region. "Ever since the early days of the Isangi programme, teams have been visiting villages every day to test the largest number of people possible, and to treat people diagnosed as infected as soon as possible. This is called active screening." Several "visits" are planned, every six or 12 months, depending on how widespread the AHT is, so that ultimately, the parasitic "reservoir" in a village may be virtually "dried up" after several effective screenings. Patients testing positive are sent to Isangi hospital for a suitable treatment. Another part of the project is called passive screening. "The idea in this case is to detect cases amongst people who themselves decide to go to the permanent diagnosis centre in Isangi", according to Bertrand Draguez. "The two screenings complement each other. Consequently, by tracking where people testing positive originate we can also redirect our active screening activities towards areas that are most seriously affected."

Clinical trials
The complicated and expensive trypanosomiasis screening test primarily involves taking a blood sample and a ganglion aspiration (if cervical lymph nodes are discovered during the check-up). These samples are then analysed in a mobile or fixed laboratory. The treatment for people testing positive depends on how far the disease has advanced. Two phases are singled out. During the first one, the trypanosomiasis symptoms are quite general: intermittent fever, swollen cervical lymph nodes and skin irritation, for example. A simple treatment is given in this case. In the second stage of the disease, the trypanosomes will have reached the central nervous system (the brain, the spinal cord) and the symptoms become neurological: headaches at increasingly frequent intervals, sleeping problems (sufferers hardly sleep at night but sleep a lot during the daytime, hence the name "sleeping sickness"), and confusion. The patient's loss of appetite and fever eventually leads to a "cachexia". The patient will die after a pathological development lasting about two years if left untreated.

"For people who reach the second stage, the frequently used arsenic-based treatment is toxic, thus causes side effects. In 5 to 10% of cases, the side effects may even result in the death of the patient", says Bertrand Draguez. "This is why MSF is taking part in a scientific project designed to streamline another therapeutic protocol, DFMO (Difluoromethylornithine). A larger quantity of product is required per patient but it is less toxic." The project is also designed to conduct clinical trials with another product, Nifurtimox, to be used in combination with DFMO.

Hunting down the tsetse fly
Another cornerstone of the MSF's operations in Isangi is the "anti-vector campaign". In other words, the idea is to catch the tsetse flies so as to reduce the propagation of the trypanosome. "We place floating traps that change colour from black to blue ", explains Bertrand Draguez."The glossina is the only insect to be attracted by these traps, where they are allowed to enter but not to leave. The trap placing operation is seconded with active screen activities so as to make it easier to interrupt the disease transmission cycle."

Isangi covers an area half the size of Belgium, hence many health districts are difficult to reach, which creates a tremendous logistical challenge: it often takes several days of travelling by canoe to reach certain remote districts. MSF is due to set up several decentralised bases, including Yambula and Yabaondo, so as to make it easier to reach the less accessible communities.

"Hidden killer"
It is plain to see: the trypanosomiasis campaign is more than a mere medical intervention. It has to combine knowledge about the geographical origin of disease, the breakdown of the community per village, the water take-off points used by the people, knowledge that the community has of the disease, but also a procedure for monitoring the trap locations, the screening exercise and so on. Consequently, an in-depth information and awareness-raising campaign is vital for the success of the programme. "Due to the trypanosome incubation period (which may be as long as three weeks) and the fairly common symptoms that develop over a period of several years, many sufferers die before they even know they have contracted trypanosomiasis", stresses Bertrand Draguez. This is undoubtedly why trypanosomiasis is sometimes called the “hidden killer". What is more, faced with unexplained deaths (including people who die from trypanosomiasis) in the wake of disorders of consciousness, and certain sorcery-based practices or beliefs, people are often designated scapegoats and banished from the community, sometimes for ever. So it is crucial for communities to be offered information about the disease and to see that people who are "bewitched" can become healthy again after receiving medical treatment.

An overlooked disease
The AHT programme in Isangi is bearing its fruits and has shown how effective it is. When duly carried out, the campaign can produce spectacular results: within a few years a district may virtually be rid of what was previously a public health scourge. "When the project was launched, the prevalence of trypanosomiasis was equal to 14% of the communities surveyed in the case of some villages", says Bertrand Draguez. "This percentage has fallen dramatically with the result that the short-term aim is to have the prevalence of AHT fall to less than 1% in the three most seriously affected health areas. In most other areas, the percentages were already between 0.1 and 0.5% in early 2006."

However, trypanosomiasis continues to be a disease that is overlooked to a great extent. It is raging only in certain developing countries (in Latin American and Africa – in various forms) and strikes solely in rural areas, far away from policy-makers. It is also quite an expensive disease to tackle, compared with other tropical diseases. There is no doubt that these factors explain the reluctance shown to develop appropriate diagnostic, methods and treatments and establish effective strategies for combating the disease. According to the World Health Organisation figures, trypanosomiasis is continuing to kill between 300,000 and 400,000 people a year in Africa alone.

Isidore: "I never realised before that I was so ill"

"The signs began appearing three years ago: the people were sleeping, were tired, apathetic. As less attention is paid to the sleeping sickness problem, and fetishism has become more prominent in the daily environment, people generally thought the disease had something to do with their neighbours, child witches and so on. When people went to hospital sleeping sickness would not be diagnosed. Even the older people had forgotten the symptoms, thinking it was a new disease.

I was in charge of the technical secondary school, as head teacher. Back in November 2003, I was asked to have a test and it was confirmed that I had reached stage one of the disease. I asked for a few days to get ready then I returned.

I felt better straight after the treatment but I never realised before that I was so ill. More information must be made available, because people get the idea that the symptoms of sleeping sickness are quite severe. They are ill-informed.

Fetishism has divided entire families. After the ‘suspicious’ deaths of certain people, families consult a medicine man who MUST point to the 'witch' responsible for the death, generally someone from the family or relatives. Most of the scapegoats protest their innocence and the family breaks up. I am now pleased that information is being provided more effectively, even though we generally continue to be cut off from the world. But this is nothing compared with people living in even more remote villages …"

What is sleeping sickness?
African Human Trypanosomiasis, or sleeping sickness, is transmitted by the tsetse fly, which harbours the trypanosome parasite. Tsetse flies are found in Sub-Saharan Africa, near stretches of water and forest areas. During the initial stages of the infection, the sufferer shows various symptoms, such as fever, aches, headaches and itches. Swollen lymph glands are a common early sign. In the advanced stage of the disease, the parasite spreads to the central nervous system. The patient suffers from neurological disorders, such as sleeping problems, confusion, severely painful headaches day after day and a resistance to standard treatments, "cachexia", convulsions. If no treatment is provided, the patient feels lethargic all the time, then goes into a coma that inevitably results in death.

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