Nunavut is declining to release detailed statistics about tuberculosis, including the number of cases identified annually in each of its communities, despite the territory’s Information and Privacy Commissioner calling for more transparency in response to an appeal by The Globe and Mail.
Health Minister John Main rejected most of the Privacy Commissioner’s recommendations in a letter sent late last week. He argued that the territory’s hamlets are so small that TB-infected patients might be identified if community case numbers were made public – even though the territory reported COVID-19 cases by hamlet in real time through most of the pandemic.
“The stigma associated with TB is real,” Mr. Main said in an interview, adding that entire communities could face discrimination if it were widely known how many people in any given Nunavut hamlet have TB.
Last fall, The Globe made a formal request under Nunavut’s Access to Information and Protection of Privacy Act for five years of TB case counts broken down by community, age range and gender in hopes of better understanding where and why outbreaks occurred.
The Nunavut Department of Health declined to release anything other than annual TB case counts and rates per 100,000 for the entire territory up to the end of 2020.
The lack of comprehensive real-time data surrounding tuberculosis in Nunavut is one of many reasons it is difficult to grade the federal Liberals on a historic promise they made four years ago to Inuit communities, where poverty, overcrowded housing and poor health care access make rates of TB far higher than elsewhere in Canada.
In March of 2018, Justin Trudeau’s Liberals vowed to eliminate tuberculosis in the country’s four Inuit regions, including Nunavut, by 2030.
The promise marked “the only time that the federal government has ever pledged to reduce a socioeconomic gap between Inuit and the rest of Canada in any tangible way,” says Natan Obed, the president of Inuit Tapiriit Kanatami, the national organization that helped persuade the federal government to make the commitment.
Four years later, it’s hard to say if the pledge is helping. That’s because, unlike COVID-19 data, thorough and up-to-date statistics on tuberculosis in Canada aren’t publicly available. The last year for which the Public Health Agency of Canada published detailed tuberculosis statistics was 2017, the year before the elimination pledge.
National statistics up to the end of 2020 are expected to be released by the end of this month, a spokesman for the agency said.
Active tuberculosis infections, which are caused by a bacterium that spreads through the air and usually lodges in the lungs, can cause weight loss, fatigue, fever, night sweats and a chronic, sometimes bloody, cough. Left untreated, TB can be fatal.
Fortunately, antibiotics can cure active TB and prevent “sleeping TB” – a latent infection that doesn’t cause symptoms and isn’t contagious – from turning into a symptomatic infection.
That wasn’t the case in the preantibiotics era, when tuberculosis patients were routinely sent to sanitoria to isolate and rest. In the mid-20th century, the federal government sent thousands of Inuit to TB hospitals in southern Canada, separating them from their families for years at a time.
In 2019, Mr. Trudeau apologized for the treatment of Inuit with TB, calling the federal government’s past practices “colonial” and “misguided.”
When it comes to local TB data, health authorities in Canada’s four Inuit regions – Inuvialuit in the Northwest Territories, Nunavik in northern Quebec, Nunatsiavut in northern Labrador and the territory of Nunavut – provided The Globe with more recent figures than the federal public health agency.
Data from the Inuit regions lacked important details – Nunatsiavut, for example, would release only rates per 100,000, not case numbers – but overall they showed that TB rates were lower in 2020 than the average of the preceding four years, when the rates tended to bounce around, driven by the presence or absence of outbreaks.
The 2020 rates could be good news or bad, depending on what’s behind them. Some experts, including Gonzalo Alvarez, the consultant respirologist for Nunavut, fear the dip means that some cases of TB went undiagnosed and untreated in Inuit communities while public-health workers were consumed with COVID-19.
“I personally believe that the pandemic has set us back significantly in terms of TB and we’re going to pay that price,” Dr. Alvarez said.
Nunavut, home to more Inuit than the other three regions combined, said it identified 34 active cases of TB across the territory in 2020, down from a five-year average of 60 a year. Because Nunavut’s population of about 39,000 is so small, the lower-than-average 2020 case numbers still work out to a rate of 86.4 active cases per 100,000.
The rate among non-Indigenous, Canadian-born people in 2017 was 4.8 per 100,000.
Although Nunavut’s government released a territory-wide case count for the years 2015 to 2020, it was unwilling to say where in the territory TB cases were identified. The Globe appealed the partial refusal to Nunavut’s Information and Privacy Commissioner, Graham Steele. He ruled in The Globe’s favour, writing in a Feb. 7 decision that the territory’s public bodies “routinely offer little or no evidence” for suppressing information that should be public.
“Nunavummiut deserve to know if their government is making the right choices about TB. Is it directing the right resources to the right places at the right time?” Mr. Steele wrote. “It is almost impossible to have meaningful public discussion about these questions when almost all TB statistics are withheld by the [Government of Nunavut].”
The Nunavut privacy commissioner’s rulings aren’t binding. Mr. Main’s predecessor as health minister rebuffed a similar recommendation to release more TB data made by another privacy commissioner in 2019.
In his ruling, Mr. Steele acknowledged that tuberculosis is indeed a stigmatized disease in the North. However, he wrote that the Government of Nunavut presented no evidence that releasing tuberculosis statistics by community contributed to that stigma.
Even if it had, there’s nothing in the territory’s access and privacy law that allows public information to be hidden for that reason, Mr. Steele wrote.
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