Ileen Kooneeliusie died of tuberculosis, a treatable, curable disease. She was diagnosed far too late.
Had the 15-year-old been living in the slums of Mumbai or a favela in Rio de Janeiro, she likely would have had a good chance of being diagnosed and treated promptly.
But Ileen lived in Nunavut, in the hamlet of Qikiqtarjuaq.
Her story, told eloquently by CBC news reporter Nick Murray, is on the surface a tragedy. But it also raises a lot of troubling questions about Nunavut's response to its staggeringly high rate of TB, and about the quality of health care in Canada's Indigenous communities more generally.
Ileen's symptoms – a persistent cough, shortness of breath, headaches, lethargy – lingered for months, but in December grew acutely worse. A nurse at the local community centre put it all down to panic attacks. Come January, the teen grew so ill, she was airlifted to the territory's hospital in Iqaluit, diagnosed with pneumonia and shipped onward to the Children's Hospital of Eastern Ontario in Ottawa. In mid-January, a couple of days before her death, she was diagnosed with TB.
A coroner is investigating the death and will hopefully provide some answers. But the key question here is: Why wasn't Ileen tested sooner?
The tuberculosis incidence rate in Canada is 4.7 per 100,000 population; in Nunavut it is 229.6 per 100,000. That's 48 times higher. If someone in Nunavut has a persistent cough, TB has to be top of mind, especially if they are Inuit. Collecting a sample and sending it off to the lab for testing should be a no-brainer.
TB thrives in poor socio-economic conditions, where people live in overcrowded homes, have poor nutrition, high rates of smoking and where other health conditions such as diabetes are commonplace. The risk factors for tuberculosis read like a summary of the living conditions of the Inuit.
In the words of legendary physician Sir William Osler: "Tuberculosis is a social disease with a medical aspect."
Public-health officials know this, as do governments. Nunavut in 2013 published – and since then, in large part, implemented – an Inuit-specific tuberculosis strategy. The Chief Public Health Officer of Canada also dedicated much of his 2013 annual report to the problem of tuberculosis, dubbing it "a never-ending threat," particularly in Indigenous communities and the Far North. TB is the number one infectious disease killer in the world, infecting 10.4 million people and claiming 1.8 million lives last year. Canada had only 1,568 cases in 2014 (the latest year for which data are available). Of the 1,551 cases for which data on origin were available, 1,073 were among foreign-born residents (most from areas where TB is endemic), 318 cases were among Indigenous peoples and 160 in Canadian-born non-Indigenous people (almost all of whom contracted TB during travels).
The numbers that should trouble us the most here are the 318 cases in Indigenous communities; they are all domestically transmitted, entirely preventable and eminently treatable. Yet about 8 per cent of those cases are fatal, almost all because of tardy diagnosis.
This is not a money or technology problem. Nunavut uses some of the most sophisticated technology in the world, a molecular rapid test called GeneXpert. But to use that fancy machine, you actually have to collect sputum to test; you have to be on the lookout for TB in the first place and encourage testing.
In the background of this story is some heavy cultural baggage. There was no TB among the Inuit before contact with Europeans. Yet, by the 1800s, consumption (another name for TB) was the No. 1 killer. When efforts were made to deal with the scourge, those who were infected were shipped off to sanatoria in the south, ripped from their families and never returned. Many children who went to residential schools – where they lived in overcrowded conditions and were malnourished – contracted TB.
The mother of Ileen Kooneeliusie said that the principal barrier to getting care for her daughter was an inability to communicate the severity of her condition – because none of the nurses at the clinic spoke Inuktitut. She was not taken seriously. The language gap, and the condescension of health workers from away, have consistently been identified as an impediment to care in Nunavut and other Indigenous communities.
The story here is not just one young person's preventable death from tuberculosis, it is also another sorry chapter in a much larger, ongoing betrayal.