The Current

'It's not fair that TB is still in Canada': One Nunavut woman on life with the disease

Tuberculosis is a disease many Canadians never have to worry about. But for some, it's an all-too-common fact of life. Kilikvak Karen Kabloona opens up about life with TB, and why a disease the rest of the country has largely done away with still has a hold in the North.

Treatment made Kilikvak Karen Kabloona shaky, sick, and turned her tears orange

Kilikvak Karen Kabloona was diagnosed with latent tuberculosis last year. She opened up about her experience on social media in hopes of helping others get through their own treatment. (Kieran Oudshoorn/CBC)

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It's a disease most Canadians never have to think about.

But in the North, tuberculosis is an all-too-common and unfair fact of life, says Kilikvak Karen Kabloona.

Last year, she was diagnosed with latent tuberculosis, commonly known as TB.

"It's not fair that TB is still in Canada. It's not fair that TB exists in first Canadians," the chief executive of Nunavut Tunngavik Inc, an organization which serves as an opposition to Nunavut's consensus-style government, said of Indigenous communities. 

"It persists here because of our overcrowding and our poverty."

Kabloona recently opened up about her diagnosis, and the challenges that come with treatment, on Instagram.

High TB rates among Inuit

Although she told The Current's guest host Matt Galloway that she doesn't have the typical risk factors for TB, Kabloona says "the fact that it is so prevalent here … [is] the reason I have it."

Canada's rate of active tuberculosis is among the lowest in the world, at 4.9 per 100,000 people in 2017, according to the Public Health Agency of Canada.

Yet the report found the disease is nearly 300 times more prevalent among Inuit communities than Canadian-born, non-Indigenous people. Rates in the North are comparable to those in developing nations.

A doctor examines an X-ray of a tuberculosis patient in Jammu, India. TB rates are significantly higher among Inuit communities in Canada. (Channi Anand/Associated Press)

Kabloona's diagnosis started with a skin test, followed by lung X-rays and a sputum test, where doctors examine mucus from the lungs.

While Kabloona knew she was positive for TB, she had to wait another three weeks to find out whether it was active (contagious) or latent (non-contagious).

"There's only one physician here in Iqaluit who does tuberculosis work," she explained.

"So I didn't go outside. I didn't go have dinners with my family. [I] tried to limit contact with people."

Because latent TB has the potential to become active, it was important for Kabloona to get treatment.

I would start to get sweaty and a little bit shaky.- Kilikvak Karen Kabloona

But she dreads taking the once-a-week dose of pills.

"I would start to get sweaty and a little bit shaky," she said, adding the third treatment made her violently ill.

"I would then, a few days later, get some bumps on my skin, on my face, and my arms, feeling generally itchy everywhere."

Her tears and sweat would also turn orange because of the dye in the medication, she said.

A child's school pictures lay on a mattress on the floor in an overcrowded house in Inukjuak, Que. Overcrowding is one contributing factor to high TB rates in Inuit communities, Kabloona says. (WE CAN DO BETTER: Housing in Inuit Nunangat, Senate report)

What she hates most about the treatment is not being allowed to take it on her own.

Instead, a medical practitioner is required to watch her swallow every pill and will sometimes check under a patient's tongue to make sure they've taken them, Kabloona said. It's a method of treatment called directly observed therapy, and is practised in places throughout Canada.

"In general, for Inuit, it's difficult to plan to be at the clinic because we spend so much time on the land harvesting food," she said.

Kabloona also travels frequently for work, which makes accessing her treatment more complicated.

"Tuberculosis ... is in Nunavut because of whalers and early settlers. We still have it because of overcrowding and food insecurity, even though we are Canadians like everyone else," she said.

"To not be trusted to take the medication — it is a really difficult thing to agree to."

A new routine

Kabloona has had to create many new habits as a result of her TB treatment.

Since she can't drink while on the medication, she and a few friends have given up alcohol during her treatment and started going to the gym together every morning instead. She sews, has movie and dinner nights with her family, and is training for a marathon.

The federal government has committed to eradicating TB in Canada by 2030.

However, Kabloona believes it will continue "until we actually have adequate housing and food security."

She says she hopes posting about her experience with the disease on social media will help "other people with latent TB … understand how to get through the treatments."

Click 'listen' near the top of this page to hear the full conversation.

Written by Kirsten Fenn. With files from CBC News. Produced by Kieran Oudshoorn, Cathy Simon, Matt Galloway and Karin Marley.