The Healthcare Divide – Episode 3

In the mid-twentieth century, Inuit diagnosed with tuberculosis (TB) were taken from their communities and sent to sanitoriums in southern Canada. Many never returned, and their families never learned what happened to them. We explore this crisis and how this history has continued to affect those communities, and why even today, TB rates remain 300 times higher there than in the rest of Canada. 

Louassee Kuniliusee, tuberculosis survivor

Natan Obed, president of Inuit Tapiriit Kanatami 

Beatrice Ikkidlua, daughter of tuberculosis survivor

The Healthcare Divide

Episode 3 – The Inuit battle against TB

Elder Louasee Kuniliusee [speaking Inuktitut] 

Translator When they were heading here to the hotel. He saw a lake and he recognized it. 

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator And it has a river.

Dr. Alika Lafontaine Louasee Kuniliusee is in Hamilton, Ontario for the first time in nearly 70 years. He’s speaking Inuktitut, with an interpreter translating to English.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator When I saw and recognized the lake, I cried.

Dr. Alika Lafontaine He was one of over 1200 Inuit tuberculosis patients who were sent to the Mountain Sanatorium in Hamilton during the 1950s and ‘60s. He was only eight or nine years old.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator At that time I was just a child, and I remember it. When I saw it, I started crying.

Dr. Alika Lafontaine Forced relocation of tuberculosis patients to sanatoriums was the norm in the mid 20th century. A way to prevent the contagious disease from spreading to others. These efforts to fight the disease had devastating impacts on Inuit that are still felt today.

Natan Obed There are young people dying of TB in our communities. There have been high profile deaths.

Dr. Alika Lafontaine Canada’s healthcare system should provide equal access to everyone. But in reality, it’s a system of haves and have nots. I’m talking to the people who have experienced inequities first-hand, and those who are working to create change.

Natan Obed There is still time for the government to act and to do more. When is a crisis for Inuit a crisis for Canada? 

[sound clip] Justin Trudeau The incident rate for Inuit in Inuit Nunangat is more than 300 times that of Canada’s non-Indigenous population. That is unacceptable.

Dr. Alika Lafontaine There is a battle being fought by the Inuit against tuberculosis, an infectious disease we rarely think about in southern Canada. In this episode, we’ll try to find out why rates are still so high among the Inuit population in Northern Canada. We’re getting into some difficult subject matter today, including physical and emotional abuse experienced in the medical system. Some listeners may find this triggering, so take care while listening.

I’m Dr. Alika Lafontaine, an Anesthesiologist and the first Indigenous physician to have led the Canadian Medical Association. From the Canadian Race Relations Foundation… this is The Healthcare Divide.

Dr. Alika Lafontaine Canada is going through a re-exploration of history, you know, colonization, particularly when it came to Inuit people, caused an enormous amount of disruption and a change in the way of life. Can you share a bit about your thoughts around those disruptions and how that connects with where in your communities are today when it comes to tuberculosis?

Natan Obed The colonial interaction between Inuit and non-Inuit has sometimes been as early as the 1600s, although in most of the Canadian Arctic and most of Inuit Nunangat, it wasn’t really until the 1940s and 1950s that the Government of Canada started to get interested in moving Inuit into settlements, into southern-style communities, and providing administrative, housing, and services within what many others would see as a Canadian community construct.

Dr. Alika Lafontaine Natan Obed is president of Inuit Tapiriit Kanatami, also known as ITK, which is the national group representing 70,000 Inuit in Canada who mainly live in what is collectively known as Inuit Nunangat. This Inuit homeland is spread across four regions in the Northwest Territories, Nunavut, northern Quebec, and northern Labrador.

Natan Obed It was around that time when our TB epidemic really took off because often the housing that was in communities was vastly inferior to the housing that Inuit had been traditionally used to, and also something that Inuit had absolutely no knowledge of, for the most part. So houses were being constructed just out of, you know, plywood and newspaper and whatever random supplies that Inuit could scavenge sometimes from dumps and other places.

Dr. Alika Lafontaine Forced relocation meant Inuit struggled to survive in an unknown territory with little support and few resources. Many struggled to adjust to this huge disruption and loss. For some, it was fatal.

Natan Obed My grandmother died of food poisoning just months after she was relocated from her community to a southern community in Labrador. And it was largely because she didn’t understand how to prepare a traditional dish within an oil drum and within southern vessels that were not meant to use at all for food consumption. These are the types of things that happened to Inuit across the entire span of the country.

Dr. Alika Lafontaine The forced relocation and inadequate housing conditions became the breeding grounds for tuberculosis.

Natan Obed In the 1950s, approximately one in three Inuit had either active TB or latent TB in this country.

Dr. Alika Lafontaine People with TB were viewed as a danger to society that needed rapid isolation. Inuit Nunangat didn’t have adequate health infrastructure to deal with this. Some physicians at the time advocated for the enlargement and strengthening of the medical infrastructure within Inuit Nunangat, but were ignored. Instead, the federal government’s solution was a mass evacuation south. The archival record shows that the government was aware that the policy of evacuation was very disruptive to Inuit and that many people wanted treatment centres to be established in the North.

[sound clip] Radio Announcer When we think of the Eskimo, we generally think of them against the wind-swept background of ice and snow. One doesn’t expect to find these early Canadians in metropolitan Hamilton. But here they are in the Mountain Sanatorium under treatment for tuberculosis. 

Dr. Alika Lafontaine This is a CBC Radio report from 1959. Eskimo is not a term we use anymore.

Natan Obed Between the 1940s and 1960s about half of the Inuit population actually traveled south to be in sanatoriums to be treated for tuberculosis. At this point in time there also were not medical doctors in Inuit Nunangat. Our communities hardly had health centres with nurses. So in the summer, ships would actually come and round up Inuit who tested positive for active tuberculosis and forced them to travel south, often without telling them any rhyme or reason for what was happening to them. And sometimes those people being out of their communities for years.

Dr. Alika Lafontaine And so you now have families, like you were talking about, have these ships come through and evaluate them for an epidemic that’s spreading across the North. Can you share a bit about what that type of experience was like?

Natan Obed Yeah. The ship for a certain period of time was called The CD Howe. And that was one of the major ships that was utilized for this purpose. It would anchor in a harbour and there would be officials that would come to a camp. Often, it wouldn’t be to a community even, it would be to a place where health officials knew that Inuit had some resettlements. And if an individual within the family tested positive, then they were just told that they had to pack their things and come. And it could be an elder within the community. It could be a child, it could be, you know, a mother and son or a mother and daughter. No matter who that was, almost immediately they had to get on the ship. There wasn’t a real understanding of where they were going. There wasn’t an understanding when they might come back. And also, there wasn’t a real understanding by many about why they were being taken. There was a broad understanding that something might be wrong with them. But imagine being in that helpless scenario where your family could be torn apart in a moment with no understanding of why, and also no understanding of the duration of that departure.

Dr. Alika Lafontaine By the 1950s, around 1 in 7 Inuit were taken away from their homes, some without ever getting the chance to say goodbye to their families. Robert Williamson, an anthropologist who traveled on the CD Howe in 1953, described the ship as being “deep in misery.” He wrote that the Inuit were “herded together in the hold of the ship. Mass-fed, mass-accommodated. In the stormy seas, they were sick, they were terrified, they were demoralized. They were frightened of what was happening to them. Of what was likely to happen to them.” After a long, difficult journey, they arrived at their destination: sanatoriums in cities including Hamilton and Edmonton. Cities thousands of kilometres away from home.

Natan Obed During those times, there would also be then the next round of separation where mothers and children could be separated, partners wouldn’t necessarily be receiving care in the same institution or would not be able to live together in an institution.

Beatrice Ikkidluak She would tell me here and there about some experiences, but not all of them. And she did tell me that she had experienced a mental breakdown in the hospital.

Dr. Alika Lafontaine When she was just two years old, Beatrice Ikkidluak’s mother was sent to Mountain Sanatorium in Hamilton.

Beatrice Ikkidluak And she didn’t really tell us. She didn’t really talk to us about her experience when she was away. But here and there, when she was alone with me, she would tell me little bits of what happened. And one experience she didn’t really like was that she was shown this thing that was steaming. There was some kind of a bag and there was steaming up at the top. And she had been told that if she was not behaving, she could be put in there, in the bag where it is steaming. And she thought, oh, they’re going to burn me. 

Dr. Alika Lafontaine Experiences like this were common. Letters written by patients give a picture of what it was like. Some were treated poorly by workers. Some were starved. Some were put in straitjackets. Because doctors believed bed rest was the best remedy, the Inuit patients were forced to stay inside. Even able-bodied kids and young adults were confined to their beds, sometimes for months at a time. Many of them became depressed and suffered from mental distress.

Beatrice Ikkidluak I don’t really have a mother-daughter relationship with her from the time she was taken away. So I don’t know that real closeness of a mother. She had her life. Her mental breakdown had so much impact on her. It was hard on us children, very hard on us. Because she had been away for so long. Her in-laws had passed away while she was away at the hospital. And all the other relatives she knows had passed away while she was away. And it was too much for her. And she didn’t really know how to be a mother anymore. And she had to take medication for it. So it was very hard on us, especially me, because the others were away married and I was still at home there. I was the only one at home, so I had the most impact on her life. Mental life changed.

Dr. Alika Lafontaine After 2-3 years, many patients were sent back to Inuit Nunangat. But some were dropped off in the wrong place, hundreds of kilometers away from their actual homes. Among those who did make it home, many had problems adjusting to their previous way of life. Some children had forgotten their language and could no longer speak to their parents. Other young people were never sent back to their parents, instead being placed in foster homes without their family’s knowledge, and eventually adopted by white families in the South.

Natan Obed So we had scenarios where mothers were still looking for their children who went down south for treatment when they were very young and perhaps they were still alive and perhaps they had been adopted out. And we’ve had cases where it’s been intergenerational angst about these events and these moment in time where there is still this great unknown question of what happened to a certain person or a certain child during the course of the government administrating healthcare to citizens of Canada. It’s just unbelievable.

Dr. Alika Lafontaine And lots of people didn’t make it out of the sanatoriums alive. It is estimated that hundreds of patients died and many were buried in unmarked graves in nearby cemeteries. In cases where the families were told about the deaths, they weren’t given any information. No cause of death, no condolence letter, no details of where their loved one was buried. In other cases, families were never even informed of the death. Some Inuit spent years wondering whether their lost loved one was dead or alive. And many families are still searching for their graves.

Natan Obed You know, I heard just heartbreaking stories of young Inuit who had just a moment to say goodbye to their grandparent and then never saw them again. Like, it’s just unfathomable in today’s world to think that a community could be so split apart without any regard for the human rights of the people within that community, but also the social dynamic. That really has hurt Inuit families in many different parts of Inuit Nunangat to this day.

Dr. Alika Lafontaine In the end, these government-enforced practices failed in eliminating TB. Rates went down by the ‘70s, but a couple of decades later, started rising again.

Natan Obed Ultimately, the overcrowding in homes and the lack of interest in providing health services to Inuit communities led to a reemergence of TB in the 1980s and ‘90s. And something that we’re still struggling with today.

Dr. Alika Lafontaine You have this history of disruption and harm to communities, families torn apart because of the way that the government approached the epidemic that was going on with TB at the time. What is it like for a family now who has symptoms of TB to now engage with a health care system that has all this trauma?

Natan Obed So it’s. It’s really complicated. There is still a big stigma associated with TB that we are trying to work through. Obviously, nobody wants TB. But at the same time, when there is active TB in a community, an individual can have a huge impact on spreading TB to their close community members and close family members. As a person who’s also involved in the elimination of TB and championing TB treatment methods and community uptake of them, it’s sometimes quite tough to go back to people who have such a difficult legacy with this particular disease and ask them to trust again. But no matter what, anyone who’s providing care has to come at it with those sorts of historical references in order to provide the amount of empathy necessary to get through to the core issue of identifying and eradicating active and latent TB in our communities.

Dr. Alika Lafontaine Maybe you could help folks understand what literally happens to a patient in one of the 51 communities when they’re diagnosed, is brave enough to come out and actually say that they have TB. Because I know in the South, when we talk about tuberculosis, we often look at it as like a highly treatable disease. But obviously, with the infrastructure that’s there and the other barriers that you’ve talked about, the experience must be very, very different for someone living in the North.

Natan Obed Well, the first step is the testing for TB. And we don’t have a lot of testing capacity within Inuit Nunangat so often we rely on partnerships with southern labs. And to take a sample and to then find out the result of that sample, often it could be 7 to 10 days between the point of time of taking the sample and receiving the result. That is a really long time when it comes to the first wave of intervention for active tuberculosis. But say somebody does present with active tuberculosis. Often the first thing that they have to do is get medevaced out of their community. And so you might have to go to a regional center. You might have to fly a thousand kilometres just to get regional care. And if it is a particularly acute case, you might have to be medevaced to Ottawa or to Winnipeg or to Yellowknife or to Edmonton. So even today, if somebody has a severe case of tuberculosis, they most likely will need to come south still to receive treatment. 

Dr. Alika Lafontaine For someone coming from Pond Inlet, for example, a flight to Ottawa is about the same distance as flying from Winnipeg to Los Angeles.

Natan Obed Medical professionals will generally know that they are dealing with a Northern patient, but, largely, a patient will be not receiving services in their mother tongue, will not have other people from their community that they can lean on to get through these really difficult times and have to then work through all of those language and societal differences to receive care. We do have these echoes of health inequity and also real huge challenges when it comes to many cases. The infrastructure in our communities and asserting our self-determination because of all that happened in that time. It’s just astounding that this happened in Canada. And it’s, you know, one of the large reasons why the Canadian government and the prime minister himself apologized for the treatment of Inuit during the TB era.

[sound clip] Justin Trudeau We have to know our history. We have to face the hard truths that are part of our past. Because, for too long, the government’s relationship with Inuit was one of double standards, and of unfair, unequal treatment…[fades under]

Dr. Alika Lafontaine In March 2019, Canadian Prime Minister Justin Trudeau delivered an apology for the government’s mismanagement of the TB epidemic.

[sound clip] Justin Trudeau This was a shameful chapter in Canada’s history. Culture and language eroded. Families would never again be whole. Lives were shattered beyond repair.

Dr. Alika Lafontaine The federal government pledged money to address the TB crisis today. And a joint commitment was made together with ITK to eliminate TB. A crisis that’s been ongoing since the 1940s.

[sound clip] Justin Trudeau Last year, the Government of Canada and Inuit Tapiriit Kanatami committed to eliminating TB across Inuit Nunangat by 2030, and reducing active TB by at least 50 per cent in the next six years… [fades under]

Dr. Alika Lafontaine But over four years later, Inuit across Inuit Nunangat continue to face overcrowded living conditions, high rates of poverty, and lack of access to medical care. TB outbreaks are still active. Then COVID happened.

Natan Obed Luckily, Inuit didn’t have, you know, crises to the point of dozens and dozens of people who died. There were deaths from COVID, but they were limited in relation to the threat of severe outcomes. What happened with our TB elimination work, though, is it was basically all put on hold. The health centers weren’t really open. People weren’t going regularly to get tuberculosis screenings in the time of COVID. And almost all of the resources from all of the jurisdictions, for good reason, were put towards COVID and and the considerations for COVID. But in that time, there was a drop in tuberculosis numbers that we see in our data from our communities. And it was thought in by some circles to be an actual progress in our attempts to eliminate TB. But really what it was was a gap in surveillance and a gap of service. And so we have, in 2023, had a number of community outbreaks. And any of the progress that we might have thought that we had made towards eliminating TB during COVID really isn’t showing in the numbers that we have this year. It’s fascinating to me that billions and billions of dollars were put towards COVID and the elimination of COVID. And we are in the midst of working on eliminating tuberculosis and the best we could do in budget 2023 for Inuit was 21 million over three years for 51 communities and a rate of 300 times the national average for TB.

Dr. Alika Lafontaine The investment is actually lower than that, according to the government announcement. 16.2 million over three years. 

Natan Obed So difficult to swallow that one.

Dr. Alika Lafontaine And just looking at the amount of resources that you really would need to fight this in an effective way. Where does that leave the effort? What would you actually need to make the progress?

Natan Obed First, 121 million over seven years for coordinated TB elimination efforts, whether this is public health outreach campaigns, whether it’s community wide screening, whether it’s investment in research for either improved methods to test for tuberculosis or to create courses of treatment. There’s that essential piece of the puzzle. We also put in a school food program ask for all Inuit who are in the education system to have healthy meals every single day. And we put that as a ten year ask and we got $0 for that in budget 2023. And we also know that investments in housing are also essential because this is an illness that is an illness of poverty. And if you put nutrition, housing, the active treatment of TB and the research that goes into doing that the best we possibly can and they then provide health services, it’s that equation that is going to undoubtedly lower the rates of tuberculosis in our communities. We still want the government to be with us in the elimination targets by 2030. There is still time for the government to act and to do more. And ultimately this is a preventable public health crisis. We know how to treat tuberculosis. The research and the lived experience from other jurisdictions and the outcomes all show that it is possible. Why that isn’t applied in the Canadian Arctic for Inuit is still a question mark, really. I mean, is it racism? Is it indifference? When is a crisis for Inuit a crisis for Canada? How many more times the rate would we have to have for the federal government to unequivocally provide the resources to eliminate TB? Would it have to be 600 times the rate? A thousand times? Or would there need to be some sort of political moment where, and this is very crass to put it this way, but, who needs to die in what scenario for the government to act? Ultimately, we see, like with Joyce Echaquan and with racism in the healthcare system, that Canadians sometimes and politicians move because there is a tragic death of somebody who should not have died after decades of advocacy and lobbying by people about the very issue that now all of a sudden politicians are motivated to do something about. And TB, we’ve already gone through these scenarios. There are young people dying of TB in our communities. There have been high profile deaths. It is just still really difficult for me in a leadership position to try to figure out what I’m doing wrong in the way that I’m articulating this, in the way that I’m lobbying with the federal government, because ultimately we haven’t received the support that we need to to do the work that is necessary for our communities to not have this as an epidemic.

Dr. Alika Lafontaine When you look out 20 years from now, where do you think the path is going when it comes to tuberculosis in Canada’s North?

Natan Obed So in one road we have the best case scenario, which is that we have poverty reduction work happening in our communities. We have food security work. So that children have enough to eat, that community members have enough to eat. We also then have multiple investments in overcoming our housing crisis so that we reduce our rate of overcrowding from 55% to the Canadian average, which is about 9%. And we do that not just through social housing, but we create opportunities for community members to own their own homes and to be in the type of housing that fits best for them in the part of their life that they’re living. And then we also have investments in TB elimination. So identifying active and latent TB in our communities and providing treatment for those who have it. That takes money and time and effort. But if we’re going to eliminate it, that is part of the solution. And then the other part is the healthcare system in general, which is to provide better public health and better healthcare delivery and more Inuit-specific healthcare delivery so that Inuit buy into the healthcare system and we feel like it is ours and that we are not going into another alien space that has hurt so many of our immediate family and our relatives and asked to enter into that space as a condition to get care. So there’s that scenario. The other scenario is that we have status quo investment from governments, which keep our overcrowding rates of 55%, keep our food insecurity rates at around 70%, keep our median income at around 23,000 to 24,000 and continue to just marginally invest in TB work. And we will probably see 300 to 500 times the national average for TB moving as the status quo in the next 20 years. The path is really up to all of those who are responsible to care for citizens of these jurisdictions. It’s up to myself, as ITK president, and also for our land claim leadership. And is certainly a part of the government of Canada’s responsibilities to ensure that we take that first path and that we all celebrate our successes together.

Dr. Alika Lafontaine A part of that success involves reconciling the past. It’s not enough to treat TB with just medicine. In 2019, the same year as the government’s apology, the Nanilavut Initiative was created together with the federal government, ITK, and four regional Inuit organizations. In Inuktitut, Nanilavut means “let’s find them.” The project helps families find lost loved ones who never returned home after being sent to southern sanatoriums. We have to remember, understand, and share in the memories and stories. To bring back the presence of those gone and keep them alive. In order to truly eliminate TB and create trust within the healthcare system, there must be healing and closure. Here’s Louasee Kuniliusee again, the TB survivor who was part of a group of Inuit elders who returned to the Sanitorium in Hamilton last summer.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator Being a true Inuk, I was born. I was born in an igloo.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator Inside an igloo. That was only available because back then we didn’t have housing.

Dr. Alika Lafontaine He remembers how foreign Hamilton was to him.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator When we arrived here, we had no knowledge of Western traditions.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator I’m very thankful for all the help that we were given.

Dr. Alika Lafontaine Louassee made it home, but he was changed, inside and out.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator I’m here today, but half of my lung is gone.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator My left side, no lung, but I have a lung on the right side.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator When we had come here, I became very ill, and they had to remove my left lung.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator I had my surgery in Ottawa and I, at that time, I died.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator The doctor I had came and he told me that I have died.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator And he hugged me and started crying.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator The doctor told me, because of a miracle you are here today.

Dr. Alika Lafontaine While the sanatorium itself is long gone, the memories and the pain remain. This visit is another step forward in the long journey ahead to healing, recovery, and closure.

Elder Louasee Kuniliusee [speaking Inuktitut]

Translator Today I’m in Hamilton because our gods saved me.

Dr. Alika Lafontaine Medical ethics are supposed to be rooted in doing good and avoiding harm. And while every health provider, at some point in their career, causes unintended suffering, there is a responsibility for us to uncover unintended pain, no matter how well it’s hidden. Violations of medical ethics are not excused by good intentions. A quote from the Canadian government’s 2019 apology says this even more clearly,

[sound clip] Justin Trudeau This policy wasn’t an accident. It was purposeful. It was done even though the Government of Canada knew the toll on Inuit families.

Dr. Alika Lafontaine It continues…

[sound clip] Justin Trudeau To the people who were sent south. We are sorry. 

Dr. Alika Lafontaine While apologies can signal new beginnings, four years later, the TB crisis in Canada’s North continues. Reconciliation is an action word and Inuit are still left waiting.