Or: A Tale of Two Leukaemias
The patient and the problem
Mavuto is a healthy 14-year-old boy. Of late, he’s been feeling weak and off his food. He’s also had some unusual mouth ulcers.
These relatively vague symptoms belie a very specific problem. Inside Mavuto’s body, within the bones where blood is made, something has gone awry. One his blood-forming stem cells was damaged and began to multiply uncontrollably – that’s what cancer is. Always renewing itself, forever young, it’s ventured into a dangerous game in perpetuity because, in the end, patients and their cancer must together sink or swim. And, ironically, the price for immortality is death.
Mavuto’s cancerous cell has now grown to millions. They’ve invaded his bone marrow and are spilling into his blood. Mavuto has acute leukaemia. But the kind he has is unusual. It’s called Acute Promyelocytic Leukaemia (APL). With an awful propensity for causing severe bleeding, it’s one of the most feared cancers but, strangely, also one of the most curable. If you must have leukaemia, APL is the one you ‘want’ as long as you can survive the dangerous initial stage. In a way Mavuto was lucky – curable leukaemia, prompt diagnosis.
But there’s one final detail to the story that changes everything: Mavuto is in a rural hospital in the eastern province of Zambia. And it will mean all the difference between life and death.
Setting the scene
Zambia is beautiful. Year’s end heralds the wet season, and life-giving rains sweep across the eastern province, orchestrating a flurry of growth and activity. Lush green plants sprout everywhere, strange animals fill the air with ritualistic songs, and geckos crawl across your wall at night as you fall asleep. And the most vibrant form of life comes from the Zambian people themselves: in their colourful dress, their laughing, and their singing; in the musical bustle of the marketplace and the hum of their social lives: they live moment to moment, day to day, relatively free of the anxieties that permeate our own society. Home to over 70 ethnic groups and languages, Zambia is rich in culture, practises democratic elections and is safe from violent conflict. But against this colourful backdrop it struggles with poor health and poverty, especially in the rural countryside where diseases take a heavy toll on human life.
Saint Francis Hospital is a joint government-charity hospital in Zambia’s eastern province, serving some of the poorest people. All services, tests and treatments are free of charge, regardless of beliefs, ethnicity, age or gender. It’s a wonderful thing in such a poor part of the world. But the corollary is that the hospital is often out of stock for medications, test reagents and medical supplies.
Patients who can afford to leave their crops bring with them the faded pages of their medical files, soiled, as they are, with the dust and dirt of their impoverished lives. Some of the poorest and sickest come from across the border from Mozambique and, in remarkable generosity, they too are treated without charge. They describe their symptoms and our minds run through common diagnoses – malaria, tuberculosis, HIV. It’s easier to diagnose one of these because of global programs that attract international funds. By comparison, conditions like cancer are relatively neglected; and our hearts sink when cancer rears its head.
The role of tests and resources
You might think the major challenge to healthcare in Zambia is resources and… well, you’d be right! But it soon becomes apparent that resources per se are not always the only or even greatest obstacle. When we have a test in Australia or the UK, we expect reliable, accurate results. We don’t think about the quality assurance that gives us confidence in these results – exciting things like QC, reagent care, preventative maintenance, pH and temperature monitoring, and Standard Operating Procedures! Like cancer, laboratories are relatively neglected in humanitarian efforts. So we set to work to improve our analyser results, train staff in microscopy, and develop lab manuals.
When blood fails
So here we are again, oil to lens, focusing down on the cancerous cells of another leukaemia. Large, richly coloured – beautiful even – it’s hard to imagine these cells are the cause of so much trouble. Eighteen-year-old Rebecca thought she just had infected leg ulcers, but soon she was learning about a condition she’d never heard of – that she had blood cancer, that her blood was failing, and that, with acute leukaemia, only one thing was certain: things could only get worse. Untreated, acute leukaemia is 100% fatal, usually within a few weeks or months. Rebecca needs to embark on a seven-hour journey to the capital, a long way from her family and village. A quiet tear ran down her cheek, but very quickly she brightened to face her reality with the resilience of a young heart. Transport wasn’t available, so her family decided to make their own way rather than wait. As she was clinically well and so young, she had a good chance of survival and even cure.
When systems fail
On the other side of the planet, Australia’s health system is world-class. We expect high standards in our hospitals, just as we have one of the highest standards of living in the world. When patients die unexpectedly it’s usually for a number of flaws that combine in an unlucky patient. In 2005, when sixteen-year-old Vanessa Anderson died suddenly in a Sydney hospital following a head injury, an enquiry looked into all of the things that contributed to her death. You can think of such system flaws as like holes in slices of cheese that, when they align, conspire against the patient. These holes are detected in enquiries and reforms made to prevent similar incidents in the future. Lives are saved because of lessons learned from the tragedies of our past. Vanessa’s death, we hope, wasn’t in vain.
When there is no cheese
Back in rural Zambia the situation is often the opposite. For such patients, even before they leave home, the odds are stacked so heavily against them you might imagine instead that it’s their lucky stars that need to align for a chance at survival. For different reasons, Mavuto and Rebecca will struggle to survive their leukaemias. We never did find out what happened to Rebecca – the physician in Lusaka told me weeks later she hadn’t turned up. But for Mavuto, we got to see his deterioration first-hand.
The precariousness of life in rural Zambia
Life and death are part and parcel of the Chewa peoples’ landscape. The spritely play of children is tempered by the ease with which they die. It’s hard to accept the routine way many patients lose their life here. Sometimes we wonder about the decisions patients like Rebecca make, but it’s surely not just their views on life and death that are influencing things. Patients universally dislike travelling to the capital, so far from home and loved ones. Many prefer the advice of the traditional healer, who, if they can’t cure Rebecca’s leukaemia, might make her feel better nonetheless. And livelihoods, family obligations and education always bear heavily on decisions. So a mere choice does not, in and of itself, equate to adequate volition. It’s not easy to tease out all of the things that make patients decide one way or another, and it’s often hard for us to understand them. And, after all that, perhaps the Chewa people really are also more at peace with life and death than we are, and more accepting of where the tides take them.
But Mavuto’s family were willing to go for treatment. I thought by introducing rapid diagnosis we’d have aligned the stars for patients like him. I was wrong.
Sometimes the little things make all the difference. It’s a long trip to the capital, requiring an ambulance, fuel, a driver and a nurse. The cost is burdensome to a hospital where essential medicines routinely run out. When it became clear urgent transport wouldn’t be available, we scheduled Mavuto for a ride with one of the doctors driving to Lusaka. Unfortunately, the night before the planned trip, he deteriorated. He now needed oxygen, and couldn’t make the journey.
We treated him as best we could with the resources we had. Patients with Acute Promyelocytic Leukaemia struggle because they haemorrhage. They need blood transfusions, but we didn’t have the right blood products. An ambulance was scheduled to take him on a Monday, but this was cancelled as the hospital couldn’t find the resources for the trip, and more time was lost. While we tried again to organise urgent transport, Mavuto worsened, and we could do little beyond watch as he began to bleed internally; as agitation gave way to somnolence; as he fell into unconsciousness; and as leukaemic blood filled his airways, unclasping his last hold on life. He passed away on a sunny afternoon, but life would continue as usual in eastern Zambia.
Let’s align the stars
This wasn’t merely a case of systems failing an unlucky patient. The truth is the system was not set up to save his life from the start. In the end, resources did come back to foil things, and the reality of his poverty would bear on his survival, as it does for many like him.
Mavuto is just one of many patients who can’t be transferred for life-saving treatment because of lack of funds. It’s also a problem for patients coming to our hospital. In one meeting we discussed the impact of transportation on maternal mortality, of women or their babies dying or suffering disability because they arrived too late, or not at all, and of transport vehicles stranded on dirt roads. Improving one aspect of healthcare in isolation isn’t enough to save a life like Mavuto’s – all of the links in a chain of survival need to be secured. Having medications in stock, adequate staffing, safe clinical practices, quality laboratory services, and safe transport are all essential parts of good hospital care. The weakest link, in this case, was the last.
Building a durable solution takes time, political will, money and advocacy. But in the meantime, we can do something! The next leukaemic patient we had was a 12-year-old boy. This time, anticipating delays, some staff quickly pulled together funds and transported him to Lusaka.
Mavuto’s death is tragic, but if we can learn lessons from the death of a boy in Africa, we can save lives like his in the future – just as lessons learned from the tragedy of Vanessa Anderson is saving Australian lives today. In this way, their legacies survive with us in the lives that we save. If you’d like to help, you can donate to fund the transport of ill patients to and from Saint Francis Hospital. The campaign will launch on Monday 6th of May but the site can already accept donations. With a few dollars we can help align one more star that will make all the difference in a less fortunate part of the world.