The sickly stench of human sweat and excreta hit us hard as the back door of the cattle truck swung down. The first few people tumbled out, dishevelled and disorientated. The evidence of the three-dsay journey through tropical rain and dense bush was splattered over the truck. It was stained with mud, like a monochrome Pollock painting. They had come to us, to our small bush hospital, desperate for a cure.

A child with sleeping sickness is brought by truck to an MSF clinic. © Remco Bohle

 

It was late 2001. The hospital was in a small village in northern Uganda. The village was just a few tumbledown shops and huts, bisected by a rust-red dirt track. But to our southern Sudanese patients who had endured the long ride and tedious border crossing, it must have looked like a lot more. All had been referred to us by a charitable organisation north of the border for the treatment of human African trypanosomiasis, better known as sleeping sickness.

 

Patients rest after receiving an injection to treat sleeping sickness © Lori Waselchuk

 

In the United Kingdom, sleeping sickness is one of those ?textbook? diseases. In other words, a disease you see pictures of (remember those beautiful curved parasites?) while studying for the MRCP exams ? but never expect to see in real life. But the beauty has a beast behind it. The reality is a devastating disease that causes progressive disability, then death. The ?progressive disability? masks a terrible human cost: a prolonged neurological illness that leads to behavioural changes, psychosis, incontinence, ataxia, hyper-somnolence and eventual coma. And it affects more than the patient alone, placing a tremendous burden on carers and on families already crippled by poverty.

If the disease sounds bad, the treatment is even worse. Melarsoprol, one of the two main drugs available for the late stage of the disease, is extremely toxic. It causes an acute encephalopathic reaction that kills one in every 20 patients. So here was my predicament. Among the cattle truck of arriving patients, 20 were at the late stage of the disease. I commenced treatment with melarsoprol, wondering whom it would kill: the young girl, her mother, the tiny grandmother, or perhaps none of them?

 

A nurse examines a patient suffering from sleeping sickness © Remco Bohle

The ward round the next morning revealed a motley group of patients. There was the young child with the earnest expression and the pretty white shirt. She had a massively enlarged set of lymph nodes in the back of her neck that would have made Dr Winterbottom proud. There was also the 50-something grandmother who maintained a defiant and resolute attitude towards her illness. She eyed my youthful looks suspiciously, (correctly) interpreting them to mean downright inexperience. And then there was Isaac.

Isaac was a late-stage patient on melarsoprol;18 years old, with bright eyes and flashing white teeth. He was attired in shorts and a tatty yellow t-shirt imprinted, somewhat improbably, with the image of the football star Zinedine Zidane.

He lay on the bed in a relaxed pose - arms behind his head and legs crossed.

Catching my gaze, he asked, "You like football?"

"Sure" I replied, somewhat surprised at his use of English.

"World Cup, next year; Africa is going to win!"

"You mean Senegal; or South Africa?"

"Yes, Africa."

"Hmm, what about England?" I offered.

"No, no.." he replied, wagging his finger, "England are too..." He began gesticulating a hump around his abdomen.

"Too fat?" I suggested, wondering amusedly if he was thinking about Paul Gascoigne.

"What about Nigeria?" offered one of the nurses.

We carried on the conversation (albeit with the help of a translator) for a further 10 minutes. Finally, dejected that no one shared my enthusiasm for an English victory, I continued with the ward round.

 

A nurse administers medication to Roza Oleru to treat the side effects caused by the medicine used to treat sleeping sickness. © Lori Waselchuk

The next day, Isaac told me he felt well. Like many of the other patients, he was not entirely sure he wanted all his treatment. And, like all the patients on the ward, he was aware of the risks. The nurse beside me explained to him again that without treatment he would definitely die. Perhaps it would not be next week, or even next month, but soon. But like most people who live under tenuous circumstances, it was difficult for him to think beyond the next few months. In the end he decided to continue treatment through faith in our judgement.

Three days later, in the afternoon, one of the hospital watchman called me. A garbled message managed to convey to me that a patient had had a "reaction". I wondered who it was while I cycled down to the hospital. But in my heart, I had already guessed that it was Isaac.

He was lying on his side. He had had a short seizure and had not regained consciousness. His Glasgow coma scale was 4. His breathing was cheynes-stoking. His eyes no longer seemed bright, but had that glazed look of impending death. I approached him like all the other critical cases I had been taught to assess in A&E. Airway, Breathing, Circulation. But we had no means (apart from a Guedel) to protect his vulnerable airway and no assisted ventilation or even oxygen to support his breathing. Well, at least there was a circulation for me to work on. We put him on a standard cocktail of steroids, fluids and antibiotics, and hoped for the best, but I knew the prognosis was poor.

A lumbar puncture is used to check for presence of trypanosome parasites. © Serge Sibert/Cosmos

That evening, over a consolatory beer, I mulled over the situation. I felt angry that I had to give lethal drugs to poor people with lethal diseases. I felt guilty. In the back of my mind the worm of doubt twisted uneasily. What if our laboratory had made a mistake? Perhaps he was an early rather than late-stage patient. It was, after all, just a few cells seen in his cerebrospinal fluid that had sealed his fate. What if the conventional wisdom was wrong? Would he have even been better off without treatment?

It was two agonising days later that Isaac finally died. Unfortunately we had no quick way to return his body to Sudan, so we buried him in a small piece of land offered by a local church. It seemed an ignoble fate, to be buried far away from home with no loved one present. His distant relative who had accompanied him had already departed for the long trek back home.

There was no difficulty documenting the cause of death ... acute reactive encephalopathy. Contributory factors were duly noted as drug treatment and human African trypanosomiasis (Gambiense spp). I could, of course, think of a dozen other contributing factors. The misfortune to be born in an impoverished country torn apart by a 20-year civil war was an obvious one. There were clearly other wider issues that somehow conspired to send Isaac to an early grave.

 

A lab technician draws blood to test for sleeping sickness at a sleeping sickness clinic in Omugo, Uganda. © Lori Waselchuk

If there is one area that starkly demonstrates the growing divisions of wealth, perhaps it is the field of medicine. In the rich countries of the world, our tools and drugs get increasingly sophisticated. Blinded within these narrow confines of continuous scientific progress, are we perhaps starting to lose the broader picture in the world? What of social progress in the field of medicine? Are the "great" leaps forward we make today truly great if they fail to improve the well-being of most people globally? Evidence-based medicine for those that have, antiquated or no medicine for those that have not?

I distinctly remember two consultants once arguing about "which was the better ACE inhibitor". I could not understand why then, but the conversation disturbed me. It triggered my move to rural East Africa where in many places there was not an anti-hypertensive in sight.

 

An MSF team screens villagers for sleeping sickness in Sudan ©  Serge Sibert-COSMOS

In the "developing world", we frequently have to compromise care in the name of practicality. For instance, there is an alternative drug to melarsoprol called eflornithine. But unlike the former, which is given as an IV push once daily for 10 days, it has to be given as a 6-hourly IV infusion for 14 days. It is therefore often viewed as "not practical" to give in the field. Meanwhile, there is precious little research into alternative and safer treatments for sleeping sickness.

Rather than seek creative solutions to what admittedly seem like insurmountable hurdles, one often sees compromises, albeit necessary ones, that stretch dangerously close to resignation and even defeatism. Here are a few (real) examples I have heard over the years from health professionals working for international organisations in sub-Saharan Africa:

• New malaria treatment too expensive? No problem, just carry on using the old ones with limited efficacy. After all, an efficacy of 50% means you still can cure half of them!

• Tuberculosis treatment too difficult to give? No problem, just don't treat them - oh, unless they are a confirmed sputum positive case (which let's face it, is unlikely in view of the paucity of functioning laboratories. And, at least you can tell yourself that you don't need to worry about creating MDR TB).

• Can't give ARVs to everyone who needs them? Well ... actually I won't even go into the plethora of arguments I have heard against universal treatment provision.

• The story of Isaac - a story that I am sure can be repeated by endless tropical practitioners - encapsulates many of these wider problems. These include a lack of simple and effective public health interventions, poor access to health care and medicines, the paucity of practical diagnostic tools for common infectious diseases, minimal research into tropical and neglected diseases, and on and on- a familiar litany.

All these factors are important, but there are three other things that are essential: commitment, vision, and leadership. These factors alone can stimulate action and a "can do" attitude that can lead to rapid progress. Take, for example, the provision of ARVs to those in need.

For a long time, it was "impossible" to provide ARVs to poor people in developing countries. Due to various campaigns to push treatment, there has been more than a 100% increase in people receiving ARVs since December 2003. Today in sub-Saharan Africa, the region with the highest burden of HIV/AIDS, approximately half a million people are receiving these drugs.

But what of the beleaguered tropical practitioner, struggling with compromises, poverty and enforced practicality? Well, hope still remains in Pandora's Box. Hope that eventually enough people will care, and that this will force the political will necessary for change.

It is this dynamic - the social imperative rather than new scientific developments - that will eventually determine the fates of people like Isaac.

The author with a football team made up of MSF staff in Uganda. © Manica Balasegaram

I still remember the joy that I witnessed in Sudan when Senegal beat France in the opening match of the 2002 World Cup. They didn't go on to win the tournament but it was a famous victory that will be remembered over a lifetime. And I still hope for one other thing ... that I can one day see an African team lift the World Cup. Isaac would have liked that.