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What Is African Sleeping Sickness?
Sleeping sickness (also known as human A
frican trypanosomiasis) is a deadly disease common across sub-Saharan Africa—including parts of Sudan, Democratic Republic of Congo, Central African Republic, Chad, and Uganda. One-third of its victims are women of child-bearing age; one-quarter are children.
All it takes is one bite of the tsetse fly for a person to become infected. The tsetse fly lives along the edges of rivers, putting people at risk whenever they go to bathe or collect water—from what is often their only water source.
Without early treatment, sleeping sickness affects the brain, causing severe neurological disturbances. People are often unable to sleep, or they sleep too much. They become agitated, disoriented, forgetful, and confused. Infected patients must undergo painful spinal taps to distinguish between the early or late stage of the disease, so they can receive the right treatment. As the disease progresses, patients eventually slip into a coma. Then, without treatment, they inevitably die.
Finding a Successful Treatment
Because of the dangers of using melarsoprol, an arsenic-based drug so painful it is often referred to as “fire in the veins,” Doctors Without Borders began to use a little-known drug called eflornithine to replace it.
It wasn’t toxic, the doctors told us, but it wasn’t ideal. Patients had to endure 56 slow intravenous (IV) infusions—each taking two hours—over a two-week period. And the long hospital stays just weren’t possible with so many patients living in remote areas, or unsafe, war-torn regions where hospital evacuations were always a risk.
For better treatment, Doctors Without Borders had identified a promising lead—in the form of a drug called nifurtimox, which is used to treat other similar parasite diseases. So DNDi started clinical studies in 2004—in partnership with Doctors Without Borders, the Ministry of Health of the Democratic Republic of Congo (DRC), and the Swiss Tropical and Public Health Institute—to develop a new combination of oral nifurtimox pills and IV eflornithine, called nifurtimox-eflornithine combination therapy, or NECT.
It worked.
Within seven days of arriving at the hospital, patients are back on their feet—with just three more days of pills to take at home. Instead of taking 56 IV infusions over two weeks, patients now take 14 infusions over one week, in addition to an oral nifurtimox pill taken three times daily for 10 days.
In 2009, NECT was added to the World Health Organization’s Essential Medicines List for the treatment of late-stage sleeping sickness.
Today, Doctors Without Borders creates NECT kits to make it easy to deliver the treatment even in the most remote regions of the countries affected by sleeping sickness in Africa. Two pharmaceutical companies, Bayer and Sanofi, supply the drugs and support distribution, and the World Health Organization covers the costs of delivery and treatment. DNDi is now conducting clinical studies to document how particularly vulnerable patients, including pregnant women and children, tolerate the treatment in “real-life” conditions and also supports implementation of NECT in the field through training of health staff, support to local supply chain systems, and logistical assistance.
When it comes to finding solutions for neglected diseases, DNDi is proof that partnerships—and a needs-based approach to research—work.
The Future for African Sleeping Sickness
We know that NECT is making a difference in the lives of thousands of people. In fact, the majority of patients diagnosed with sleeping sickness today are receiving NECT instead of the toxic drug melarsoprol. But we are not stopping there.
DNDi already has two drugs in the pipeline that could make treatment even easier to administer, even better for patients, even cheaper.
We’re working on developing two possible oral drugs that could be taken just once a day for a maximum of 10 days and could be taken regardless of the stage of the disease. No more IV lines, which are difficult to set up in remote areas, no more painful spinal taps to diagnose late-stage sleeping sickness.
An oral drug would transform treatment of sleeping sickness and offer new hope to thousands of patients who would otherwise be ignored and forgotten. Stay tuned…