Sleeping sickness (HAT) has accompanied the Mutombo family for the past two years. Alongside his mother, Joseph is resting tiredly at a specialised treatment centre after they underwent painful lumbar punctures (a diagnostic test that is performed in order to collect a sample of cerebrospinal fluid) to confirm whether or not they have the advanced stage of sleeping sickness. His father and older brother try to tease each other, but there is fear that mother and child are suffering from the same disease that nearly killed Joseph just nine months ago. His mother tries to comfort the 6-year old who is moaning either from the pain of the lumbar puncture or the difficulty he has in even holding up his head.

In 2004, the family was happy to welcome their seventh child in a country ravaged by armed conflict. During the same period, Joseph, their sixth child, began to suffer from high fevers and convulsions. When he did not get better, father and son made the long twoday walk to the village hospital forty kilometres from their home. Believed to have meningitis, he was treated and sent back home. However, his symptoms soon got worse, and Joseph was increasingly irritable and having difficulty walking and talking. This time, his father borrowed a make-shift bicycle from the neighbours and managed to make it to the hospital. A lumbar puncture confirmed that the boy had the advanced stage of sleeping sickness. At this critical stage, the parasites had invaded his blood-brain barrier and could be deadly if left untreated.
Realising the seriousness of his illness, the doctor had no choice but to treat him with melarsoprol, which feels like “fire in the veins” to the patients. The treatment could in fact kill Joseph (as it does with 1 in 20 patients who receive it). Joseph however recovered and again went home to his family. A year and a half later, a screening team from the national HAT surveillance programme went to Joseph’s village. He and his entire family were tested, and it was seen that both he and his mother still had parasites in their blood. They were referred to the regional hospital, in the company of their family.

The same doctor who saw Joseph 2 years ago is reassured that there is now an improved treatment, not as toxic as melarsoprol, requiring mother and child to be hospitalised for ten days. However, this represents a major concern for the father providing that, even though the treatment is free (thanks to the donations of sanofiaventis to the WHO), hospitalisation still costs money. Given the poor resources gained from farming, he is worried about how he will be able to cater to the needs of the rest of his children.
This new treatment, the combination of intravenous eflornithine coadministered with oral nifurtimox therapy (NECT), will save Joseph and his mother. However, the disease will still be an important economic and social burden for the family, as the disease has done to hundreds of thousands in the past century. NECT is just one step ahead for improved patient care for HAT. The need remains for good diagnostics and a simpler, effective, and safe stage 2 treatment in order to help to alleviate the burden of sleeping sickness.