- This article first appeared on IRIN.
- For infected children modern treatment is even further out of reach.
- "The problem is that you can hardly keep them still in their beds, which is necessary to administer infusions of the newer drugs," said Timmermanns. The dangerous and potentially lethal Melarsoprol remains the drug of choice for children until safer drugs are found.
ISANGI (IRIN) - It is the same brutal ritual every morning. As the nurses approach, the children in the tent outside Isangi hospital start to panic and scream. Three pairs of strong hands secure one after the other into a chair and slowly a syringe pumps poison through a catheter into their veins.
"The injection is a general attack on the body," said Katrien Timmermanns, a Dutch nurse working for Medecins Sans Frontieres (MSF), who is supervising the treatment. "Melarsoprol [the drug] is burning their veins. The next day the veins are often so hard that they cannot be used for the next injection."
The Democratic Republic of Congo (DRC) is experiencing a deluge of forgotten diseases. The collapsing health system, wars and ensuing movements of people created fertile ground for their revival. The most feared disease is African trypanosomiasis or sleeping sickness: it leads to the graveyard if left untreated.
The World Health Organization (WHO) estimates that about 300,000 people are infected with sleeping sickness in Africa and more than 60,000 people die from it every year. It is transmitted by the tsetse fly, which, if a carrier of the trypanosomiasis parasite, infects people and animals with their bite. Tsetse flies thrive in swampy areas and along rivers, both abundant in the DRC.
Exact numbers of infected people are difficult to ascertain, but in some provinces sleeping sickness has already become the first or second highest cause of mortality, ahead of HIV/AIDS, according to experts.
Until now, the only antidote available to most patients in the DRC was Melarsoprol, a derivative of arsenic. But it is so toxic that it melts plastic syringes and can kill patients before they die of the illness - on average about one in 20.
In 1925, the Congo's Belgian administrators banished people infected with sleeping sickness to islands in the Congo River, together with TB patients and leprosy sufferers. By the mid-60s the disease had been almost eradicated. With no money to be made from a sleeping sickness cure, the pharmaceutical industry made no effort to develop better treatment for the dangerous illness.
The Melarsoprol treatment normally takes 14 days. But because of the side effects - one of the most severe being inflammation of the brain - it sometimes has to be interrupted and resumed later, prolonging the horror to almost a month. "Sometimes you feel as if you are torturing the children," said Timmermanns.
But now there is new hope. MSF is testing a cure that could ease the pain and bring relief.
One of the worst infected places in the DRC is Isangi territory, a neglected area in the forest of the Congo basin about 120 kilometres down the Congo River from Kisangani, capital of Orientale Province. Its public hospital is rundown and lacking funds and none of the doctors and nurses understood what was happening five years ago when many people literally went crazy and eventually died. In 2002 it became clear something was terribly wrong when entire villages were deserted as inhabitants fled what they thought were evil spirits evoked by witchcraft.
In Yafira, a settlement of mud huts along the Lomami River, upstream from Isangi town, IRIN talked to Mboli Bayane, 40, the first man diagnosed here with sleeping sickness in more than 40 years.
"When I felt sick in 2000 I first went to the witchdoctor. He asked for chickens and a black cloth and performed rituals."
Mboli suffered sleepless nights and felt tired and worn out during the day. He often fell asleep from one moment to the next in bright sunlight. The traditional medicines did not help.
A year later, doctors in Kisangani hospital performed a painful lumbar puncture on Mboli. The results were alarming: the spinal fluid was full of trypanosomiasis parasites - an indication not only that the disease had returned - but also of the start of an epidemic. Worse for Mboli, the doctors had no medicines. He still suffers from pain in his hands and legs, after-effects of the Melarsoprol treatment he received from MSF.
Surrounded by villagers, Dr Agnes Sobry listened to a preacher, who called himself the Angel Michael and told his followers in Yassanga village, an hour's drive from Isangi town, that they had been invaded by evil spirits.
"You need to confess, pray and take holy water. All diseases come from the devil. In the hospital they cannot help you," he thundered.
Sobry asked Angel Michael whether he had been screened for sleeping sickness. The preacher denied this, wielding a Bible and repeating his call to pray among the receptive audience.
"That shows you the difficulty. This man is a risk to himself and his community," said Sobry. "His incoherent talk tells me that he is likely a patient himself."
Sobry and her husband, Dr Vincent Buard, are heading a treatment and research project supported by MSF that should help to eradicate the deadly disease again and with much less pain. It started in September 2004 and has saved more than 1,400 people from certain death.
Passive screening among patients in Isangi hospital, and active screening among the population in identified villages, provided an insight into the extent and epicentres of the epidemic. Yassanga was one of the most severely affected villages, with a cumulative prevalence of 10 percent, which is considered extremely high by experts.
There were many new graves in the area and the local people recount horror stories of spouses, children and neighbours who became violent, abusive and started talking nonsense and then finally died. Cured patients, such as 13-year-old Belussa Balian, recall how they suffered from blackouts and terrible nightmares.
"People were chasing and beating me in my dreams. I asked who they are and they told me they were sorcerers," he said.
A new cure
Two years into the research project hundreds of children were lining up in front of their school in Yassanga and nurses and laboratory technicians were busy taking blood samples and analysing them under the microscope. Since the start of the study and treatment campaign, the prevalence of sleeping sickness has fallen here by more than 50 percent. Sobry hopes the rate will drop by another half in the next six months.
"It can take 20 to 30 years to completely eradicate the disease from a heavily infected area if you don't react quickly," Sobry said. "The aim is to bring the prevalence below one percent, which is considered the threshold requiring intervention."
Five different tests are conducted on the spot, some checking whether people are infected, others testing the degree to which the trypanosomiasis parasite has invaded the body. One man clenches his jaw while a nurse sticks a long needle into his back to milk spinal fluid. The amount of parasites found in the liquid determines the course of treatment. The spinal fluid also tells whether a person is free of the parasite after taking medicines or not.
The progress of Trypanosomiasis is measured in two stages, both requiring different treatment. Patients in stage one receive injections of Pentamidine, an anti-parasitical drug introduced in 1940 and also used to treat certain types of pneumonia. This treatment is relative easy and well tolerated, requiring injections into the muscles over 10 days. But most sufferers only seek the advice of a doctor or healer once they reach stage two.
Patients in the advanced second stage receive Melarsoprol, which is the protocol required by the Congolese government. In its study MSF uses two new treatments. The first is recommended by WHO and requires infusions of Eflornithine four times a day over 14 days.
Eflornithine was originally developed to treat cancer. The much safer alternative to Melarsoprol is nicknamed the 'resurrection drug' because of its spectacular success in bringing people out of a coma. Eflornithine-based drugs are also sold in the west as women's facial hair removers, but because of high prices and limited supply, Eflornithine cures are not widely available to people in the developing world.
The second protocol uses Eflornithine infusions twice a day over seven days, in combination with Nifurtimox tablets that are taken orally and have been used successfully for years to treat Chagas disease in South America. This protocol is preferred by MSF, because it reduces treatment time and is cheaper, using less medical equipment, such as gloves and catheters.
"First results seem to show that the new alternative is as good as the WHO protocol," said Buard, "but we will need to monitor our patients for another 18 months. We have no definitive results yet."
It is a great step forward if the new cure proves successful. But it may still take a long time until sleeping sickness patients can benefit from it in the Congo. In Isangi hospital local nurses specially trained by MSF Belgium administer the infusions with material and technical help provided by the humanitarian organisation.
But doctors and nurses fear that a treatment using infusions over a lengthy period may prove too dangerous in a country where the health system is lacking almost everything.
"Bacterial infections caused by poor hygiene are a serious danger," said Timmermanns. Curing sleeping sickness with infusions needs "well-trained staff, sterilising equipment, gloves and many new needles", all of which are lacking in the DRC.
For infected children modern treatment is even further out of reach.
"The problem is that you can hardly keep them still in their beds, which is necessary to administer infusions of the newer drugs," said Timmermanns. The dangerous and potentially lethal Melarsoprol remains the drug of choice for children until safer drugs are found.
In its fight against forgotten diseases, MSF calls upon pharmaceutical companies and donor governments to help step up research and development efforts to stop the suffering of hundreds of thousands of poor Africans. "It's just not acceptable any more to use Melarsoprol," the group said.