Three hundred times. This is how much higher the rate of tuberculosis (TB) is among Inuit people than among non-Indigenous people born in Canada. It’s a staggering statistic, especially in a country that boasts one of the best health systems in the world and where this ancient and curable disease has been eradicated for decades in most areas.
Yet, in Indigenous communities, particularly Inuit populations, tuberculosis epidemics still constitute a public health crisis. Five communities in Nunavik, in northern Quebec, and three communities in Nunavut are currently experiencing outbreaks, and the number of infections is increasing.
People are still dying from the disease in Canada: this is notably the case of Ileen Kooneeliusie, 15, who died during an evacuation flight from her Nunavut community to Ottawa in 2017.
In 2018, the federal government committed to halving TB rates in the Inuit population by 2025 and eradicating the disease by 2030. We are far from reaching this goal. In 2021, twice as many people were diagnosed with TB compared to the previous year.
Canada must step up its efforts to resolve this humanitarian crisis in the North by focusing on its root causes, including intergenerational trauma caused by colonial policies, and supporting community-based solutions.
Many abuses
SeeChange, the organization I founded in 2018 to rethink humanitarian action by supporting community-led health responses, is working with Inuit communities to find solutions to the TB crisis. The community members and health workers I met in Nunavut tell the same story: tuberculosis is not just a medical problem, it is a social justice issue.
The bacterial infection causing TB has been widely associated with poverty. A 2019 study published in the Journal of Epidemiology and Community Health reveals that living in poor housing conditions is a factor in disproportionate rates of tuberculosis among Inuit populations.
I have seen first-hand the poor quality of housing in Nunavut, with inadequate ventilation, rusty pipes, cracked walls and crumbling floors.
35% of households do not have enough bedrooms for their occupants, compared to 5% nationally, according to a 2020 report from Nunavut Tunngavik. Overcrowding and poor housing conditions make the disease spread more easily.
Food insecurity in Nunavut is four times the Canadian national average. The lack of healthy, affordable food makes many Inuit people even more vulnerable to TB. Studies show that good nutritional support for people with TB and their contacts can reduce the incidence of all forms of TB by 40%.
In addition to these physical difficulties, the legacy of colonialism and systemic discrimination have led to widespread distrust of the healthcare system. The Truth and Reconciliation Commission recognized in 2015 that gaps in health outcomes among Indigenous people are the result of racism and colonization. These include past government policies of sending Indigenous people to residential schools and tuberculosis sanatoriums. Between the 1940s and 1960s, one in seven Inuit people were sent without consent or understanding to tuberculosis sanatoriums in the south of the country.
This summer, SeeChange co-hosted a historic healing journey for a group of TB sanatorium survivors and Inuit youth in Hamilton, where 1,200 Inuit TB patients were treated. Like boarding schools, abuse in tuberculosis sanatoriums was systematic. Elders shared heartbreaking stories about their long stays as unaccompanied children. “For years, it felt like I had a dagger of ice in my back,” survivor Meeka Newkingnak told me after the visit. “Now I feel like it’s finally melted.” »
Bold measures
The trauma of the survivors of this experience is still profound and has been passed on to subsequent generations. Turning the tide on this crisis will require focusing on the underlying causes of TB.
In addition to the work already undertaken to address the housing crisis and food insecurity, intergenerational trauma caused by TB sanitariums must be recognized as a social determinant of health in Nunavut. Canada should fund more healing trips for survivors. Time is of the essence, as most of them are between 70 and 80 years old.
Trauma-informed models of care must be designed with the community. SeeChange’s work has shown that by developing responses in collaboration with affected communities, it is possible to address health and the social determinants of health simultaneously.
Health Canada should also explore other effective and culturally sensitive health care solutions, such as the Nuka program in Alaska, which is a community-owned and community-focused health care model.
Finally, Health Canada should also adopt promising health technologies from other countries, such as innovative screening methods and child-friendly TB drug formulations, which do not currently exist in Canada, and implement of a national TB surveillance program.
Canada is a major donor to global efforts to end the global TB epidemic, which kills approximately 1.5 million people each year. It must now take bold action to ensure its own citizens in the north are not left behind.