TB still a killer in Nunavut, as health workers and politicians struggle to stop the outbreaks

This story is part of the CBCNewsprojectBeyond 94: Truth and Reconciliation in Canada.Read more stories in the series and look for further coverage this week.

Cindy Paniaq of Igloolik, Nunavut, was diagnosed with tuberculosis in December 2017.

"I was scared, and I was shocked, and I didn't know how I got it."

The mother of four and grandmother of two plays a central role in her family, supporting her children and regularly caring for her grandchildren. All of this was thrown into chaos when she was diagnosed with tuberculosis.

"I couldn't kiss my children and my grandchildren because I [didn't] want to infect them," she said.

Paniaqwas one of 100 Nunavut residents diagnosed with active tuberculosis last year. From 2016 to 2017, the number of active cases in the territory nearly doubled, leadingNunavut's chief medical officer,Dr.KimBarker, to describetuberculosis in Nunavut as an epidemic in aJanuary interview.

Paniaq had heard of tuberculosis outbreaks but never thought she would catch it herself. When she did, Paniaq had to isolate herself for two weeks, sending her grandchildren to live with other family, not seeing her friends and missing community events. It was a necessary sacrifice, but one that came at a bad time.

"It was hard because it was during Christmas," she said.

"It was very lonely. I had nobody to talk to. I even asked to speak to the mental health worker."

A dangerous disease

Tuberculosis is a disease caused by bacteria that most commonly affects the lungs, often causing chest pain and coughing. The disease can be either active or latent. When active, patients exhibit symptoms and are contagious. When latent, the disease remains dormant in the patient's body with a five to 10 per cent chance of progressing into active tuberculosis over a person's lifetime.

Tuberculosis is curable, but when left untreated, it can be fatal.

Fifteen-year-old Ileen Kooneeliusie of Qikiqtarjuaq, Nunavut, died in an Ottawa hospital in January 2017. Kooneeliusie's parents say she was sick for two years before finally being diagnosed with tuberculosis only hours before her death.

• 'She was my only girl': Nunavut teen's death sheds light on failures in fighting TB

According to the government of Canada, the rate of active tuberculosis in the general population is 4.4 cases per 100,000 people, according to reported cases in 2014. The number stays relatively stable in most of the country, but in Nunavut it's a different story. In 2017, the territory had a rate of261.6 cases per 100,000.

"No matter where we are in Canada, we as Canadians deserve a base level of care," said Natan Obed, Inuit Tapiriit Kanatami president. The non-profitis headquartered in Ottawa and represents more than 65,000 Inuit across the country.

"What we're asking for is what other jurisdictions and other Canadians take for granted."

• What's your call to action? Join Beyond 94: Truth and Reconciliation in Canada a CBC Indigenous Facebook forum for conversation and sharing ideas

This disparity of health outcomes between Indigenous and non-Indigenous Canadians was highlighted by the Truth and Reconciliation Commission report, which was published in 2015.

The commission was created in 2008 and had the mandate of discovering the facts and informing Canadiansabout the history and impact of Indian Residential Schools. In its report, the commission laid out 94 calls to actionintended to"redress the legacy of residential schools and advance the process of Canadian reconciliation."

In call to action number 19, the commissionrecommended the federal government establish measurable goals to identify and close the gaps in health outcomes between Indigenous and non-Indigenous communities.

Call to action number 18 urgedgovernments to acknowledge that the current state of Indigenous health is a direct result of previous Canadian government policies.

The spread of TB

Tuberculosis is an airborne disease. Those who catch itdo so by breathing in particles carrying the germs coughed out by someone with active tuberculosis. The bacteria can hang in the air for several hours, meaning tuberculosis spreads well in poorly ventilated, overcrowded homes.

The World Health Organization recognizes social and economic risk factors for contracting TB, includingovercrowded living conditions, poorly ventilated housingand undernourishment.

According to the Nunavut Housing Corporation, 44.8 per cent of homes in the territory are overcrowded and more than 2,000 residents are on a waiting list for public housing.

• Hazmat suits required: 116 Nunavut public housing units need heavy-duty mould cleanup
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The Nunavut Bureau of Statistics' 2017 Nunavut Food Price Survey found thatprices formany basic food items remain twice as expensive as they are in the south. A recent Statistics Canada report based on 2012 data said at least 55 per cent of Inuit in Nunavut aged 25 and over hadlived in a household thatexperienced food insecurity in the previous 12 months.

• A quarter of Nunavut's population faces moderate to severe food insecurity, report says

"We know that tuberculosis exists because of many of the social conditions that we want to change in our communities," said Obed.

"So at the same time as we are talking about treatment for tuberculosis, we also need to talk about better housing, better education and better food security."

The Inuit-Crown Partnership Committee last year announced a tuberculosis task force aimed at finding ways to eliminate TB among Inuit. The 2018 federal budget allotted $27.5 million over five years to eliminate tuberculosis in Inuit Nunangat, which includes Nunavut, Nunavik, Nunatsiavut and the Inuvialuit region.

• Inuit, Ottawa launch task force to fight tuberculosis in the North

Removal to sanatoriums

In the 1950s and 1960s, Inuit with TB were taken away for lengthy courses of treatment at southern sanatoriums. Many died and were buried in the south, and their families were left in the dark as to what had happened to them.

The stigma the disease still carries, along with a lack of trust for medical professionals, make Inuit less likely to seek treatment,saidJaypeteeArnakak, an instructor at Nunavut Arctic College in Rankin Inlet.

• Telling the story of hundreds of Inuit, sick with TB, who were shipped to Hamilton

"Most Inuit realized that some of the earlier patients were not coming back," said Arnakak.

"I think it frightened a lot of Inuit to a point where they didn't really want the medical intervention and, as a result, TB was never really eliminated."

The non-profit InuitTapiriitKanatami is working with the federal government to retroactively provide people with information about lost family members and secure an official apology.

"Inuit who were taken south to sanatoriums for treatment didn't come back and their families were never notified what happened to them," said Obed. "These are human rights violations."

• 'It gave me a sense of closure': Database on Inuit tuberculosis graves offers some answers
• National Inuit leader calls for apology from federal government over lost TB patients

Healthcare challenges

Nunavut's chief medical officer of health, Dr. Kim Barker, saidthere are also other reasons why fighting tuberculosis remains a problem in the territory.

"Perhaps we hadn't been screening as sufficiently as we should have in many of the communities and as frequently as we should have," she said.

Diagnosing active cases quickly is key to minimizing its spread but there can be logistical delays, including the risk of damage to testing samples as they get flown thousands of kilometres south to laboratories, and the perennial shortage of health-care staff in the territory.

An auditor general's report last year found that in March 2016,62per cent of the territory's community nurse positionswere vacant. The department relies heavily on temporary labour to fill in the gaps.

"Despite the fact that we are in a better shape now than we have been, [staffing] continues to be a challenge," said Barker.

Currently centre stage in Nunavut's tuberculosis epidemic is the hamlet of Qikiqtarjuaq, the hometown of Ileen Kooneeliusie. In that community, at least one in 10 of the hamlet's 600 residents is infected with the disease.

There, the Nunavut Health Department, with funding from the federal government, has taken the unprecedented step of setting up a mobile clinic in acommunity hall and is screening everyone in the hamlet for the disease.

• Major effort underway to fight tuberculosis outbreak in Qikiqtarjuaq, Nunavut

"The mayor has been incredibly supportive and is helping us identify households," said Barker. "We find it might be easier to bring a whole household in and screen them all at once."

The intervention in Qikiqtarjuaq will cost more than $1 million and will serve as a template to learn from and replicate in Nunavut's 16 other communities with high rates of tuberculosis.

In Igloolik, Paniaqis no longer isolated from her family said she plans to continue with her treatment, which can last several months.She`s happy the government is taking big steps to tackle tuberculosis, but it's the small things, like providing patients with support and information, that she said make the most difference.

"I was going through mental [health] issues, because I didn't really understand what TB is, because they didn't explain it," she said.

The screening clinic in Qikiqtarjuaqis expected to wrap up by mid-April.