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Fear of epidemic of deadly sleeping sickness

[Angola] Engracia, with her sister Carolina and mother Antonica. IRIN
Engracia, with her sister Carolina and mother Antonica
Eighteen-year-old Engracia lies sprawled on her narrow bed, staring vacantly into space. A drip in her arm releases vital drugs to fight the disease eating away at her brain as her mother, fearing the loss of yet another child, anxiously watches. Engracia, who just a few months ago was working as a cleaner in Luanda, the capital of Angola, is one of 17 patients being treated for Human African Trypanosomiasis (HAT) – or sleeping sickness - at a centre run by the NGO, Medicins sans Frontieres (MSF), in the town of Caxito in Bengo province. This chronic disease, transmitted through the bites of infected tsetse flies, was all but eradicated before independence in 1975, but again reared its ugly head in the 27 years of civil war that followed. Now, with hundreds of thousands of people on the move in peacetime, there is a serious risk that they will take the parasite with them into areas where uninfected tsetse flies may bite them, become infected and pass on the disease, sparking an epidemic that Angola, struggling to rebuild its war-shattered infrastructure, can ill afford. MSF and the national Institute to Combat and Control Trypanosomiasis (ICCT) believe that 14 of Angola's 18 provinces are threatened by the tsetse fly, which infects both humans and animals. Although limited surveys have been carried out in only seven provinces, they believe that as many as 4.3 million people, a third of Angola's population, could be at risk. In 2003, 96 people undergoing treatment are known to have died from the disease, but doctor Richard Mathela, a field doctor at the Caxito project run by MSF Belgium, believes that this vastly understates the true figure. "This is only the tip of the iceberg, I'm sure," he told IRIN. "Those are the people who were under control in the seven provinces - we don't know about the outside. The figures must be much higher, because the coverage of our activities is very low. I'm sure this will be a very, very serious problem in Angola in a few years," he warned. The Caxito project screens patients for the disease and offers treatment, including regular monitoring for two years after the symptoms disappear. But it is only reaching a tiny fraction – about six percent – of Angola's 13 million people. The danger of this disease is that it can lie dormant or undetected from six months to 10 years before beginning to show the early symptoms. These could include headaches, tiredness and neck pains - signs of a wide array of illnesses that are often brushed off as minor ailments. "At the beginning, the signs are similar to malaria, influenza and many other common diseases," explained Mathela. "Maybe you have a headache, but there is no way that you know that it's sleeping sickness, so you take a tablet and forget about it." While antibodies fight the infection, the trypanosoma parasite constantly evolves until eventually the body gives up and the disease breaks through the blood-brain barrier. Only in this second phase do the symptoms become more neurological and, as the name suggests, sufferers find they cannot sleep at night and are unable to stay awake during the day. "Victims of this disease often appear foolish, or like they are on drugs, but that is just the disease affecting their brain," Mathela said. If left untreated, the body wastes away and the patient slips into a coma and dies. Part of the problem is that even doctors in the big cities have insufficient knowledge to diagnose the deadly disease. Many sufferers, like Engracia, only discover they have it by chance. Her father got a job in Bengo, near the MSF centre, and locals alerted her parents to the possibility that her changed behaviour could be due to sleeping sickness. The family symbolises Mathela's fear that the disease is spreading fast and unchecked. Five years ago, they moved to Luanda from Kwanza Norte province, which, along with Bengo, Uige and Malanje, is considered one of the worst affected. "I had three children who died. We thought it was malaria or some other illness," said Antonica, Engracia's mother. Mathela, shaking his head, thinks otherwise. "I can't be certain, but I'm almost sure that it was sleeping sickness which killed the other children," he said. "The problem is very, very dangerous in Angola now because of peace. People are moving vast distances without any control, and this means you can find the parasites everywhere." The medicines used to fight the disease carry their own risk, and the principle treatment, Melarsopol (Arsobal), is a highly toxic drug based on arsenic. Not only is the series of injections incredibly painful, but the drug itself carries some alarming side effects, including encephalopathy or inflammation of the brain. Mathela estimates that the drug will kill seven people out of every 100 who use it. There is an alternative, which, while less effective, is also less poisonous. But even this therapy, known as Eflornithine (DFMO), has its downside. At the moment it is provided free by drugs giant Aventis, only because it was found to have a more lucrative commercial use as a cosmetic hair-remover. But its supply is not guaranteed, it is still toxic and more research is needed to develop safer, more effective treatments. "The problem is that we don't have a guarantee of this free supply, plus it's very difficult to administer," Mathela complained, noting that patients had to take the drug via infusion in a process which took days. Mathela, a Congolese doctor who has been with the project since the early days of its launch in 2002, worries that all his team's efforts will not be enough. "The national programme alone cannot control this disease. We need more operating partners in the field and a good level of coordination. On a national level, we need more collaboration to make active screenings and improve the coverage zones. On an international level we need to guarantee the supply of effective and safe drugs, and improve the screening technique so that potential patients don't slip through the net," he said. "We need to mobilise research and development. MSF cannot work alone. It needs some help, some support," Mathela noted. "Sleeping sickness may be sleeping now, but one day soon it will wake up, and then we will have a big problem – one which won't be very easy to solve," he warned.

This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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