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There were 139 cases of tuberculosis identified in Pangnirtung between January of 2021 and May of this year, the largest outbreak to be disclosed in the territory since 2017.Pat Kane/The Globe and Mail

The president of a major Inuit organization has reiterated her call for transparency after The Globe and Mail published an investigation of a major tuberculosis outbreak in Pangnirtung, a hamlet of about 1,500 people on Baffin Island.

In an interview, Aluki Kotierk, the president of Nunavut Tunngavik Inc. (NTI), stressed the need for the Government of Nunavut to release TB data for individual communities, as she did in a letter to Nunavut’s Health Minister earlier this year.

In the Feb. 24 letter, Ms. Kotierk urged John Main to heed a ruling by the territory’s Privacy Commissioner calling for TB case counts to be released for all of Nunavut’s 25 fly-in communities. She wrote that the government’s refusal has “jeopardized the health” of residents and acted as an impediment to signing a crucial TB action plan

The non-binding Feb. 7 decision by the Privacy Commissioner arose from an access-to-information appeal filed by The Globe.

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In the letter, Ms. Kotierk said the information that The Globe requested – including TB case counts and rates, broken down by community, age and gender – was essentially the same information NTI wanted made public before it would sign a joint TB action plan with the territorial government.

Nunavut’s “ongoing refusal … to provide this and other relevant information in a timely and fulsome manner has jeopardized the health of Nunavummiut by hindering implementation of the TB Action Plan,” Ms. Kotierk wrote in the letter, a copy of which NTI provided to The Globe.

Until a plan is in place, NTI won’t give the territorial government any more of the $13-million in federal money it received to begin working toward the Trudeau government’s goal of eliminating TB in Inuit communities by 2030.

In 2018, when Ottawa made the vow, it allocated $27.5-million over five years to Inuit Tapiriit Kanatami, a national organization representing 65,000 Inuit. ITK divided the money among four regional Inuit organizations, the largest of which is NTI.

Each Inuit group, working with local health officials, was supposed to come up with an action plan tailored to its specific needs. Nunavut is the only Inuit region where an agreement has yet to be reached.

Nurses at Pangnirtung’s understaffed health centre were begging for help from the territorial government in the summer of 2021 as TB spread and officials held off on publicly declaring an outbreak, a Globe investigation found. While extra staff have arrived and a satellite clinic has opened in the hamlet after months of delay, some residents say the Government of Nunavut isn’t doing enough to combat a disease that has long plagued Inuit communities.

The Globe and Mail

NTI has an important official role in Nunavut. It is charged with ensuring that the territorial and federal governments keep the promises made to Inuit in the Nunavut Agreement, the territory’s founding document.

The Globe investigation, based on more than 200 pages of internal documents obtained through an access-to-information request, revealed that front-line nurses were begging for help managing TB in Pangnirtung last summer, months before an outbreak was declared on Nov. 25, 2021.

The government didn’t reveal the extent of the spread until six months after declaring the outbreak. This followed The Globe sending a list of questions for its investigation and Pangnirtung’s mayor asking for greater transparency.

There were 139 cases of tuberculosis identified in Pangnirtung between January of 2021 and May of this year, the largest outbreak to be disclosed in the territory since 2017. Thirty-one were active TB disease; the rest were latent infections that aren’t contagious and don’t make people sick, but which can eventually turn into active TB.

Given its population of only about 1,500 people, Pangnirtung’s TB incidence rate in 2021 ranks among the highest in the world, exceeding rates regularly seen in the least developed countries in Africa.

The Nunavut Department of Health declined to release TB case numbers for any other community, saying that doing so would risk identifying patients in small hamlets, stigmatize entire communities and serve no practical purpose outside an outbreak.

Mr. Main elaborated on those concerns in his response letter to Ms. Kotierk, which The Globe obtained through a separate access-to-information request.

“In the past, hamlets have expressed concerns with releasing data publicly due to stigma,” Mr. Main wrote. “Even in cases where it would not be possible to identify the individuals, increased attention and stigma have occurred towards specific communities where there were cases.”

He offered to discuss providing community-level TB data in confidence to NTI and to hamlet officials without making it public.

But Ms. Kotierk said in the interview that such an approach would perpetuate the “colonial” idea that “we can’t make decisions for ourselves about our own health – that we’re not self-determining, intelligent people.”

Joe Savikataaq, Jr., the mayor of Arviat, also wants the territorial government to make TB case counts public for communities. His hamlet of nearly 3,000 people in the central Kivalliq region has been struggling with TB for the past few years, but he doesn’t know the true scope of the problem.

Arviat was the site of Nunavut’s first major COVID outbreak in November of 2020. The territorial government provided regular public updates on COVID case counts, a transparent approach that Mr. Savikataaq Jr. said helped alleviate stigma associated with the new virus.

“Donations poured in from all over the country to Arviat,” he added, “so there was nothing wrong with releasing numbers. No names were ever released, just numbers, and this should be the same case for TB.”

In 2020, the most recent year for which national data are available, there were 72.2 active cases of TB per 100,000 diagnosed in Inuit patients, compared with a national case rate of 4.7 per 100,000. Despite being 15 times higher than the national average, the TB rate among Inuit in 2020 was down significantly from a 10-year annual average of 184.14 per 100,000 from 2010 to 2019 – a decline some experts attribute to TB cases going undiagnosed in the first year of the pandemic.

High TB rates among Inuit are a reflection of the poverty that afflicts their isolated Arctic hamlets and other Indigenous communities across Canada, said Elizabeth Rea, the co-chair of Stop TB Canada and Toronto’s associate medical officer of health.

TB bacteria are likelier to spread in overcrowded, poorly ventilated homes and are likelier to make people seriously ill if they are malnourished, smoke cigarettes and suffer from chronic diseases.

“It’s appalling that Canadians who were born and lived their entire lives in a country as wealthy as Canada … should be suffering from TB and TB outbreaks,” Dr. Rea said.

Ms. Kotierk added that it is important to share detailed information about the burden of TB in Inuit communities. That way “the rest of Canada can’t forget” the continuing health crisis.

“Why keep it a secret so that everyone’s comfortable and forgets that we’re living under circumstances that don’t even meet the basic needs of housing and food, which contributes to the high rates of tuberculosis in our communities?” she said.

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