Features | Canada’s forgotten disease

Stephanie Law investigates why First Nations, Inuit, and immigrant communities are disproportionately affected by Tuberculosis

To most Canadians, tuberculosis (TB) sounds like a foreign disease, a disease of the past like polio or cholera. But to certain minority populations in Canada, tuberculosis is as prevalent as the common cold.

“[Tuberculosis] is forgotten by most, but not gone. [There is] a new tuberculosis case in Canada every six hours,” said Edward Ellis, manager of TB prevention and control at the Public Health Agency of Canada.

With about 1,500 cases reported each year and a six per cent mortality rate, that’s equivalent to one death every two weeks. With statistics like these, how is it that most of us are so unaware of this disease? The answer is quite simple: tuberculosis mostly affects marginalized and newcomer populations – aboriginal people, the homeless, immigrants, and refugees.

Inequity in infection
“Across Canada, 70 per cent of the TB cases are foreign-born, most of the rest are aboriginal people, and only about 10 per cent are non-aboriginal Canadian-born – a rapidly shrinking proportion,” said Dick Menzies, director of the Respiratory Division at the McGill University Health Centre.

Evidently, tuberculosis has been nearly eradicated within the non-aboriginal Canadian-born population. High rates of infection have remained in other populations.

A 2008 Public Health Agency of Canada report, released in January, found that the rate of TB is 31 times higher in First Nations populations than in non-aboriginal Canadian-born persons, and a mind-blowing 186 times higher in Inuit populations.

Don’t believe claims of Canada’s low tuberculosis rates. Among the Inuit, the rate is about 150 cases per 100,000 persons each year, which is equivalent to the average rate in sub-Saharan Africa.

“When the Inuit have high tuberculosis rates, Canada can’t say that they don’t have a high TB rate. The [non-aboriginal] population of Canada dilutes the rate so much that it becomes very misleading,” said Gail Turner, director of health services in Nunatsiavut and chair of the National Inuit Committee on Health. “The bottom line is that the rate among Inuit is unacceptably high.”

The government of Canada has set a goal to reduce TB incidence rate from 4.7 cases per 100,000 persons in 2007 to 3.6 cases per 100,000 persons by 2015. To do that, the incidence rate among the aboriginal people and the Inuit, in particular, will have to be significantly reduced. But even with a target of 3.6 per 100,000, the inequity and unequal share of the TB burden will persist.

What you should know about TB
Tuberculosis is a treatable and curable disease in Canada, but treatment is long, intensive, and can have toxic side effects.

TB is an infection that usually affects the lungs, but will occasionally attack other parts of the body. It can be separated into two categories: latent TB and active TB. Latent TB means you’re infected but the disease isn’t actively affecting your health and is not contagious. A lot more people have latent TB than you might think – I, for one, have it. Latent TB does not necessarily become active TB. In a healthy person like me, developing active TB is highly unlikely; it’s as likely as winning the lottery jackpot. Active TB is contagious, but not highly so, and usually only comes about in people who lack the capacity to stay healthy. If left untreated, active TB will kill 50 per cent of its victims.

There is treatment for both latent and active TB. Going on treatment for the latent type is a choice – recommended if you are at risk of developing active TB due to certain circumstances such as homelessness.

On the other hand, treatment for active TB is mandatory; the public health agency is obligated to enforce it.

“TB is the only disease in Canada that the public health authority has the actual authority to contain an individual. So for H1N1 or HIV, they can recommend how to behave, but they can’t force you; but with TB they can enforce confinement,” said Mary Ellen Macdonald, a medical anthropologist and professor at McGill.

The good news is that the six to eight month-long treatment for active TB is completely free.

 “It’s free because the public health benefit of people taking tuberculosis treatment outweighs the cost of the drugs,” said Menzies.

Even though treatment is free for patients, tuberculosis is extremely expensive for Canada. Health Canada estimated that it costs $47,000 to treat each person with the disease.

Unjust treatment in the past
European settlers brought epidemic TB to Canada in the 1700s, and from there, the infection was slowly spread to the aboriginal people by these newcomers.

The settlers quickly herded the aboriginal communities into tiny, crowded reserves and relocated their children to poorly-ventilated residential schools. Under these conditions, the TB epidemic spread like wild fire. Death rates in the ‘30s and ‘40s exceeded 700 deaths per 100,000 persons among the aboriginal people, and over 8,000 per 100,000 children that were confined to residential schools – these numbers are among the highest ever recorded rates of TB in the world.   
To make matters worse, treatment wasn’t yet available, and the only “cure” for TB was to put the infected individuals in TB sanatoria in southern Canada, where it was hoped that the sun and air would cure them. For individuals from First Nations and Inuit communities in the north, this meant travelling the distance to the south and leaving their families and lives behind. 
From 1950 to 1969, a ship called C.D. Howe made summer trips between the north and the south to transport Inuit with TB. When doctors decided that an individual had to go to the sanatoria, they were not allowed to go home to pack up their belongings nor to bid their family farewell. Those who died in the sanatoria were buried and their families never heard their fate; those who survived stayed in the sanatoria for an average of two-and-a-half years.

This was just barely 30 years ago – the Inuit still vividly remember the stories shared by those affected by this treatment.

History repeats itself
Overcrowding, poor ventilation, exposure to mould, and other known risk factors for developing active TB remain an overwhelming problem in Inuit communities. Following the high prevalence of TB among the Inuit communities in the ‘50s and ‘60s, a large portion of the Inuit population have latent TB and are at risk of activation today.

“TB tends to mirror what’s happening underneath, the social determinants: poor housing, overcrowding, food insecurity, high smoking rates…and [inadequate] access to health care services,” said Turner.

These are all part of the systematic oppression against the aboriginal population that we’ve witnessed in Canada’s history. TB is part of Canada’s self-perpetuating cycle of structural violence.

It boils down to the fact that there isn’t enough money or help given to the Inuit and other aboriginal populations. The lack of both financial and human capital limits the Inuit communities’ ability to have houses that aren’t overcrowded, mouldy, or poorly ventilated. Building houses in the north is extremely costly because of the distance supplies need to be shipped, and the time and energy construction takes due to permafrost and winter weather.

The communities most affected by TB lack access to necessary health facilities. “For Nunavik and northern Quebec, and northern Labrador, there isn’t the capacity of chest X-rays at the community level. Most of our communities don’t have physicians, and you have to fly [to other parts of Canada] for chest X-rays,” said Turner.

According to Turner, a group of TB contacts were stuck for 14 days away from home at a public health centre because the weather prohibited them from flying home after their chest X-rays.

“It’s a question of health equity around health care access in Canada. There should be an ability to have a chest X-ray without having to fly for days…. It’s unacceptable and would be unheard of elsewhere…. [With these limitations] of course [the Inuit are] not lining up to get chest X-rays,” said Turner.

For severe cases of TB, Inuit patients are flown to southern Canada for treatment – reminiscent of the days of the C.D. Howe.

“Those that are very sick or contagious are brought here to the south to get treatment because they don’t have good isolation facilities up north. We monitor them and when they’re better, we return them back to the north for continuing treatment,” said Amelie Tchabo Fosso, a TB nurse at the Montreal Chest Institute.

Macdonald recently published a study that looked at the urban aboriginal people’s understandings and experiences of TB in Montreal. Today, about 10 per cent of the Inuit in Quebec reside in the south.

“One of the big lessons learned from this research is that the communities know an incredible amount about TB – not just through medical knowledge – but through their experience with colonial policies,” said Macdonald. “If you have active TB and you’re going to be confined in the hospital, you’re going to be removed from any income-generating activity, which means you could lose your apartment because you have no money.”

The history of the southern sanatoria and the potential consequences of confinement in hospitals are huge deterrents for urban aboriginal people to get proper medical evaluation. But on top of the issues related to confinement, there is an underlying discrimination and racism in the health care system, particularly for homeless urban aboriginal people.

“Homeless people probably don’t get great care in the system…. There’s a bit of an attitude in the service they get,” said Menzies.

Beyond these fears and distrust of the health system, another barrier lies in something very simple – the Medicare card.

“When we tried to get [the clients at the Native Friendship Centre] to go for medical evaluations, we ran into many roadblocks. One was that a lot of them don’t have medicare cards – a huge stumbling block,” said Macdonald.

Most of the clients of the Native Friendship Centre are homeless and do not own their medicare cards – they’re either lost or stolen. Without a Medicare card, they can’t get treatment. Replacing the card requires identification documents, which you probably don’t have with you if you are homeless. Furthermore, it costs money for a new card.

The almost-Canadians
Immigrants are also affected by TB, but have a very different experience than aboriginal individuals.

“Once they have the diagnosis [of TB], they need to postpone everything in their immigration process,” said Fosso. “The immigration [officials] need to make sure the patient has finished their treatment before continuing with their application.”

While TB is not a stigmatized subject in most aboriginal communities – because it has unfortunately been commonplace for a lontime and a strong sense of community discourages discrimination – this is not the case for many immigrants diagnosed with TB.

“They think TB is a shameful disease and they are fearful of being rejected from their community, friends, and family,” Fosso said.

“A women who was foreign-born was at first told that she had lung cancer, but was finally diagnosed with TB…but she would have much rather accept the cancer diagnosis instead of TB, and she was very ashamed of it,” said Menzies. “There’s the association with HIV-infection, with being poor, unhygienic, and an alcoholic…. In Russia, it’s associated with being in prison.”

Uncertain solutions
The solution to the high prevalence of TB among Inuit communities is not to discourage living in the north.

“People think that Inuit should just move, but we’re not going to because we love it here; it’s who we are,” said Turner.

Canada needs to properly acknowledge the deficit in support for the northern communities – be it financial support, or labour support to staff their health clinics and to build more and better housing.

“The advocacy has to target improving health services, human resources, housing, and food security while at the same time we [need to] make sure we’re treating TB to completion,” said Turner.

In a press conference, Canada’s health minister Leona Aglukkaq, who is Inuk, said that it’s the provinces and territories that administer health care. The issue of jurisdiction is extremely complex and problematic for aboriginal communities.

“I think the greatest challenges for Inuit is that the governing of health is not clear…. Responsibilities contradict each other even within the Canadian TB strategy…. For Inuit regions within the provinces, the province is responsible, then in another place, the Inuit health branches are responsible for Inuit [regions] within provinces…so it’s really unclear…and when you get into [who is responsible for the] social determinants [that cause TB] it’s even less clear,” said Turner.

Another problem that Turner sees is Canada’s tendency to lump all aboriginal people together, leading to general assumptions and public health strategies that lack specific targets.

“There needs to be more clarity; we need to use First Nations to refer to First Nations, Inuit to refer to Inuit, and the Métis for the Métis, and not lump them altogether – doing this really clouds the issue,” said Turner.

Macdonald believes that the layers of bureaucracies are the most serious impediment to treatment. “You’d think it’d be easy to excuse [people without a medicare card] and let them get medical evaluation…but something as little as this issue gets blown up in many layers of bureaucracies and politics…. It’s obvious what should be done but it’s not obvious how it can be done,” she said.

The average Canadian has to be informed about tuberculosis. By talking about TB, we are able to break the silence and ensure that those with TB won’t feel stigmatized or be fearful of the isolation that accompanies the disease. The more we understand the curability and treatment of TB, the more supportive we can be.

“Knowledge influences people a lot. Understanding the disease makes diagnosis and treatment easier. It is really important to break their beliefs and values regarding TB. Once they’re broken, things become easier,” said Miguel Angel Barriga Silva, another TB nurse at the Montreal Chest Institute.

We have to be part of the solution, by staying informed and eliminating the stigma around social diseases like TB. If we can’t even openly talk about something as uncontroversial as tuberculosis, how on earth are we ever going to be able to talk openly about HIV?

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World Tuberculosis Day Panel Discussion: Missing Drugs
Wednesday, March 24 at 12:45 p.m. to 1:45 p.m.

Chancellor Hall 101, 3644 Peel

The McGill Global AIDS Coalition will host a panel discussion with three highly acclaimed professionals who will examine the impact of the global TB and AIDS epidemics, the consequences of an insufficient pharmaceutical industry, and Canada’s role in each issue.

Dick Menzies MD, director of respiratory medicine, McGill University Health Centre, will discuss the limitations of controlling the global TB and AIDS epidemics as well as the challenges that hinder treatment availability, accessibility, and innovation.

Marc-André Gagnon PhD, post-doctoral fellow, Faculty of Law, will outline business strategies and models of the Canadian pharmaceutical industry which often result in low incentives for medicinal innovation.

Rachel Kiddell-Monroe, president of the Board for Universities Allied for Essential Medicines, will bridge the gap between corporate incentives and steps that the Canadian government can take to ameliorate the situation.

The panel discussion will be followed by a demonstration outside MP Marc Garneau’s office to demand improvement in access to essential medicines worldwide and to denounce his vocal opposition to reforming Canada’s Access to Medicines Regime. The protest will begin at 2:15 p.m. sharp outside his office, #340, 4060 Ste. Catherine O. HIV-positive T-shirts, signs, and other materials will be provided.

For more information contact director@treatthepeople.com.


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