Saving lives in the name of vanity
Luiji Dracu flinches while a lab technician draws blood to test for sleeping sickness at a sleeping sickness clinic in Omugo, Uganda. The sleeping sickness clinic and screening program in Omugo is one of many run by MSF throughout equatorial Africa.
For the last five months Australian doctor, Cathy Hewison has been working for MSF on a sleeping sickness programme in war-torn Sudan. The MSF project is situated in the village of Ibba in Western Equatoria. Prevalence here is particularly high. It is estimated up to a fifth of the community are infected.
But thanks to a new deal struck with two pharmaceutical companies, patients at Ibba no longer have to experience the painful and risky treatment that was their fate only a few months ago.
However the new drug is not so new. Its abilities in treating sleeping sickness victims is well known. The drug saves lives was dropped from production in 1999 because it was unprofitable. It returned to save lives because the pharmaceutical industry discovered the potential of the drug as a supresssant to the enzymes that lets facial hair grow. It has reappeared as a vanity product - sleeping sickness victims are a distant second.
Facial hair cream, at 54 dollars a tube, was obviously justifiable.
When a vigilant MSF supporter discovered that Vaniqa facial hair cream, containing eflornithine, was being sold in the United States, the ensuing publicity mobilised the drug companies responsible - Bristol Myers Squibb and Aventis - to restart their production of eflornithine as a medication.
Previous treatment was a derivative of arsenic
Until recently, providing care to sleeping sickness patients was perilous to both doctor and patient. The only available treatment was melarsoprol, a derivative of arsenic. When injected it is extremely painful and it burns the veins used for the treatment. Afterwards, the vein is so badly damaged it can never be used again. It can also cause a swelling in the brain, leading to convulsions, coma and even death.
"It is an unpleasant and debilitating disease," explained Cathy. "Symptons include severe headaches and convulsions and people can become extremely aggressive and paranoid."
Patients often suffered paranoia and could be extremely aggressive. It was not uncommon for patients under treatment to be strapped to their beds.
They call it sleeping sickness because people's sleeping patterns change so radically that they even fall asleep during meals. But the disease is far more menacing than the name implies. The 'silent killer' is more appropriate because the hundreds of thousands of people it infects every year often go untreated and their deaths unacknowledged.
Because it poses no threat to consumers in the developed countries, there is also little incentive to research effective drugs to treat it. Until very recently the only drug available to patients with sleeping sickness, melarsoprol, was an archaic treatment first made 52 years ago. That cure has a one in twenty chance of killing them.
It is a disease that has been plaguing central Africa for centuries. In colonial times it was all but wiped out - but it made a deadly comeback in the 1970s when the resources needed for the eradication campaigns dried up.
Civil war and the mass movement of civilians fleeing conflict has led to an epidemic of sleeping sickness across countries like Uganda, the Democratic Republic of Congo, Angola, the Central African Republic, Congo Brazzaville and Sudan. Sixty million Africans are at risk of catching the disease. Yet it is a disease that most of us in the West have never even heard of.
Sleeping sickness is caused by the bite of the tsetse fly. An infected tsetse fly carries a parasite called trypanosome that enters the blood stream before eventually making its way to the brain. Untreated the disease is 100% fatal.
In one tragic incident, a relapsed sleeping sickness patient from Ibba village murdered his three-month-old niece while in a state of psychotic delusion. Incidents such as these are not uncommon and Cathy herself had a very close shave with a patient, who lunged at her with a piece of timber ripped from his bed. He was suffering from paranoia - a side effect of his treatment - and was convinced she was trying to kill him.
Doctors like Cathy Hewison were in an unenviable position - they knew the risks of injecting their patients with this caustic poison, yet they had no other option.
"When I first came to Ibba, I have to say it was one of the worst experiences of my medical career," said Cathy. "The atmosphere in the hospital was very tense. There were many patients having severe side effects from melarsoprol. Psychiatric side effects were also not uncommon and patients had to be tied to their bed. Our medical assistants were called every night for complications. It is very difficult, as a doctor, when you are on call, to hear the wailing and the screaming of the family of a patient who has just died. It was really very distressing."
New drug brings radical changes
Thanks to the introduction of a new drug three months ago, the hospital at Ibba has been transformed. Eflornithine has been dubbed the 'resurrection drug' because of its ability to revive even comatose patients. In September, eflornithine replaced melarsoprol as the first line treatment for people suffering from second stage sleeping sickness.
"I was stunned by the difference in the hospital, once we introduced eflornithine," said Cathy. "It became a completely different place. It was fantastic. There was no tension amongst the staff during ward rounds. The patients themselves were more relaxed, no one was tied to the bed anymore and the intensive care ward was dismantled. And it was purely because we had changed our treatment from melarsoprol to eflornithine.
Donation from pharmaceutical industry
The pharmaceutical companies intend to donate 60,000 vials of eflornithine to MSF, for free, each year for the next three years. Aventis have handed over the patent rights for the drug to the World Health Organisation and have offered to transfer technology and technical assistance to a potential long-term manufacturer of the drug - if one can be found.
The irony of the 'facial hair cream story' is not lost on a doctor like Cathy, working as she is at the front line of the battle against sleeping sickness.
"It does seem ridiculous that the only reason we have eflornithine available now in our hospital is because another use was found for it as a cosmetic for American women," she said. "It was thanks to someone from MSF finding it in that New York pharmacy. But it makes a good story and I'm still glad for my patients that we have it."