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Medical References for the Doctor on the Go
and the Home of the Series



26 August 1998
Written by Erwin van 't Land of MSF-Australia

All beds are empty, except this one. The 24 year old woman who occupies it hardly moves, only her chest goes up and down in the slow rhythm of a sleeper's breath. Her mother sits beside the bed, hands in her lap. Her eyes go back and forth between her child and the health worker doing his round. It is early afternoon and the sun shining through the open windows makes it an even more peaceful picture. There is no sign to give away the raging battle going on here. This young woman is on the brink of death.

Sleeping sickness patient "This morning, only a few hours ago, she was lively like the others," says the health worker. "All of a sudden, she had severe seizures and then slid into a coma. There is not much we can do for the moment, apart from trying to pull her through with a sugar solution. We'll have to wait and see."

The hospital is in Omugo, a small town in the far north-west of Uganda, an hour's drive from the airstrip in Arua. In this area, two battles are fought simultaneously. There is the battle of man against man; the Lord's Resistance Army or LRA, have seemingly no political agenda but manage to destabilise the district, causing many Ugandans to flee across the border into the south of Sudan. Many of them returned, because they found themselves in the midst of an even fiercer war on the other side of the border. And there is the battle of man against nature, more specifically the tsetse fly, the sole transmitter of trypanosomiasis, a disease better known as sleeping sickness.

The fly is hardly an impressive opponent. It is only active during daytime, can only travel short distances and is easily lured into a trap made of cloth since it is fond of dark colours and blue. Yet many millions of Africans have already died from the trypanosome parasite introduced into their blood stream by the flies.

The tsetse fly is the sole transmitter of trypanosomiasis, a disease better known as 
sleeping sickness.

Andrew Schechtman, the MSF doctor in charge of the sleeping sickness projects in Arua district, explains that there are two stages to the disease. "The first months after the infection from the tsetse fly bite, the parasite is multiplying in the blood and the lymph fluids. During this stage, the patients often have headaches, itchy skin and body and joint pains. After they have had this condition for a few months, the parasite will make its way into the central nervous system around the brain and multiply there. Then the patients will have worsening headaches and more changes in their mental status. They'll become confused, disoriented, have hallucinations, become combative. Their sleep-wake cycle changes, so that they will be sleeping throughout the day and awake all night. That is how the disease got its name. It is not uncommon to see a patient actually fall asleep as he is bringing a spoon with food up to his mouth."

The tsetse fly is a very common insect in Africa and so is the disease it transmits. Among the worst areas in terms of incidence of trypanosomiasis are areas of Angola, former Zaire and the region around the border between Sudan and Uganda. The devastating effects of the disease have been known for a long time. Dr Albert Schweitzer recorded early this century: "An officer told me that he once visited a village on the upper Ogowe which had 2,000 inhabitants. On passing it again two years later he could only count 500; the rest had died meanwhile from sleeping sickness."

In 1986, the Ugandan Ministry of Health called upon MSF to help control the disease. Their sleeping sickness control programme had run out of resources and expertise. The situation in the north of the country was only getting worse. As the programme's medical coordinator Dr Maiso explains, "we had Ugandans who had fled to Sudan coming back to Uganda. They found a big population of tsetse flies carrying the disease when they were settling in the districts of Adjumani, Mojo and Arua". Ever since, MSF doctors, nurses, laboratory technicians and logisticians have been fighting sleeping sickness in this part of Africa, side by side with Ugandan health workers.

On the grounds around the sleeping sickness wards of Omugo hospital, people sit in the sun and chat. Most patients can move around outdoors while they are here for treatment, since they have no severe symptoms. There is, however, one man in his late twenties lying on a blanket on the ground with his hands and feet tied. He seems to be having an ongoing debate with himself, rolling over from his left side to his right and back again. His sister sits beside him, but his argument is not with her. He just talks, his voice going up and down as if it were a chant. The most striking thing about it is that he is speaking English, fluently and without a trace of an accent. "I don't know where he got his education, but he must be a remarkably intelligent man," says Andrew. He is in the late stage of sleeping sickness. The cords around his hands and feet are there to protect him from doing any harm to himself or to others. This is how his family brought him to the hospital, he had become too aggressive to have at home any longer.

The next morning, when Andrew does his round, all the patients and their carers - family members who watch over them and feed them - have gathered in the wards. The young woman still seems to be in coma, but she responds a bit to her name and to the voice of her mother. A good sign, says the Ugandan health worker who was at her bed yesterday. Andrew takes his time to discuss each patient with the Ugandan staff. He asks them for their assessment, explains his ideas and discusses the treatment.

After his round, Andrew talks about why not everybody will survive. "The medications that we use have been around for a long time", he says. "But they are far from perfect. For the early stage we use a drug called pentamidine, which is well known in AIDS treatment now. It cures about 95 per cent of the people, with very few side effects. Unfortunately, we don't find many of the patients until they have gone into the second stage and they actually seek us out for treatment. The drug we use to treat that is called Melarsoprol, or Arsobal. It is a drug derived from arsenic. It has been around for fifty years and has a lot of toxicity. Many patients will have severe inflammations in the veins, swellings… very painful. About 5 per cent of patients who have this severe reaction, Arsobal encephalopathy, will go into a coma or have constant seizures. Of these people 50 per cent will die and 50 per cent will recover."

Access to essential drugs

Without treatment, every person who has sleeping sickness would die. That does not take away the irony of some patients dying from the treatment instead of the disease. Even more ironic is the fact that there is an alternative. That is, in theory. Andrew explains, "right now, there is another medicine called DFMO, or Eflornitine, which is a drug that was developed in investigations for cancer therapy. It was found to be very effective for the second stage of sleeping sickness. It has much fewer side effects and essentially, there is no mortality when treating this disease with it. Unfortunately, it is very expensive; a treatment course for a patient would end up costing about 800 US dollars, which is a cost far out of reach of the developing world. And also unfortunately, this drug has not been found to be effective for any use other than sleeping sickness. There is no market for this drug, and the drug companies are simply not making it any more".

A lot depends, therefore, on getting patients in before they are at the most severe stage of sleeping sickness. An MSF mobile team visits all parishes in Arua district, setting up a table under a tree and conducting blood screening tests for everybody who shows up. And a lot of people attend. The team manages to do up to 700 tests a day. People are familiar with the disease, everybody knows someone who has died from it. The entire population in the district is screened because the lower the number of people carrying the parasite, the less chance tsetse flies have of picking up and transmitting the disease.

When someone tests positive, a second test is done. Then the patient is asked to come to the hospital as soon as possible, which in almost all cases means getting into the MSF car right away. Once in the hospital, more tests follow, including a lumbar puncture. The aim is to make absolutely sure whether or not the patient carries the parasite. Resources are limited, treatment is expensive and can be dangerous, so the medical team wants to be absolutely sure that they treat the right people.

A dangerous cure

The results are impressive: after years of hard work, fewer than one in a hundred people in Arua district have sleeping sickness. Meanwhile, Andrew cannot hide his frustration. "The main push of this programme is to identify these cases of sleeping sickness. It is frustrating that even when we find them often we are not able to cure them because the drugs available are so limited", he says. "When people relapse after a treatment of Arsobal, we don't have this other drug available to treat them. We are put in a position where we have to say: I'm sorry, you have to go home and wait and if over the next few weeks or months we come by something to offer you, we will call you back and treat you. Most of these patients will go home and eventually die from the disease. The first patient I had to send home was a nine year old girl who had been treated four times already with Arsobal. Our statistics had shown that treating a fifth time would not have any benefit and would result in all the same toxic reactions. As much as I wanted to treat this girl, I had to tell her to go home and wait and hope to hear from us."

Early in the afternoon, the 24-year-old woman dies, killed by what should have been the cure. In the grounds around the wards, normally a lively place, the sound of the patients sobbing is punctuated by the desolate cries of the mother. Some of the hospital staff carry the body, covered in a blanket, into an MSF car. A nurse accompanies the mother on the drive back to the family's home village. It is the first death from sleeping sickness in months in the hospital. Through their tears, the other patients pay their respects. Only one man speaks, with hands and legs tied, to nobody in particular, probably unaware of his condition, certainly ignorant of his fate.

It takes a while before Andrew is able to speak about what keeps him going. "At the end of the day, the rewards are certainly more numerous than the difficulties. This town has no doctor, the Ugandan government does not have a doctor that they can have working in this town. They cannot afford to treat sleeping sickness without help from MSF. These people would all be dying if I, or someone in my place, were not here to help. Everybody we are curing is someone who would have died otherwise. And that is very rewarding."

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