THE KILLER NEVER LEFT

Denechezhe calls it "the sickness," the disease that just won't go away.

He's watched tuberculosis devastate his family and plague his community for years.

Northlands First Nation in Lac Brochet, one of Manitoba's most remote communities, has earned a dubious distinction as a global TB hot spot. It and another Manitoba community health officials will not name recorded the highest rates of TB in the world for two decades. Until 2004, Lac Brochet remained one of the world's worst-affected communities.

More than a decade ago, Denechezhe watched his ex-wife nearly die of TB of the brain in a Winnipeg hospital isolation room. He and all 18 people who lived in the same three-bedroom house tested positive for TB, too. He was supposed to wear a mask and take medication for nine months to cure his "sleeping TB."

But Denechezhe doesn't trust medication, not even Tylenol. He stopped taking the TB pills when he couldn't handle the intense side effects of nausea and fatigue. He failed to finish his medication again two years ago, after a nurse warned him the disease could strike at any time.

Now, he's been coughing for weeks and worries he's already infected his young son who started coughing days go.

"Maybe it'll kill me. I don't know," said Denechezhe. "But this sickness seems to be carrying on. We get rid of it for a little while, but it seems to pop up left and right."

***

It's been more than three decades since the last sanatorium in the province shut its doors and tuberculosis faded in the minds of most Manitobans.

But TB never went away. It is still rampant in First Nation communities in northern Manitoba. It's a medical illness propagated by non-medical factors, tangled in a historical and political web that has long neglected the poverty that helps TB survive.

TB is a barometer for overall health: where there is poverty and suffering, there is TB. Plain and simple, it is a symptom of poverty, a byproduct of overcrowded homes, malnutrition and poor overall health.

That same deadly mix let H1N1 flourish in the north this summer and made TB a scourge on Manitoba reserves for a century.

Medical experts warned for years that a major problem would arise in the North if TB outbreaks and the living conditions that contribute to them were not addressed. The warning went unheeded, and the disease exploded in places such as Lac Brochet five years ago. Now, Manitoba has one of the highest TB rates in the country.

In northern Manitoba, living conditions on some reserves are often described as Third World -- many houses are decrepit, some don't have toilets or running water, and multiple families are crammed under one roof. Inadequate hygiene, rotting walls and close quarters make reserves ripe for the spread of an airborne disease. When one person gets sick, everybody gets sick.

In 1937, TB officials noted that overcrowded homes and poor living conditions on reserves contributed to the high rate of disease among First Nations. In 2009, as many as 18 people are crammed into three-bedroom houses at Lac Brochet.

It's no wonder that community recorded some of the highest TB rates in the world - more than 600 cases per 100,000, more than 100 times what it should be. By comparison, the national rate in Canada is five cases per 100,000. In developing countries such as Bangladesh, the rate is slightly below 400 cases per 100,000.

Last year, the Assembly of Manitoba Chiefs petitioned Canada's Auditor General to investigate what federal health officials are doing to control the rising rates of infectious diseases such as TB on reserves. Grand Chief Ron Evans hasn't heard back. He has no idea how many cases of TB surface on reserves because federal and provincial health officials refuse to divulge that information, citing privacy reasons. Evans said they can't solve the problem until they have all the facts.

"My suspicions are if they provide that information, it will be so alarming they would have to put resources toward the root causes, which is of course overcrowding, issues of poverty, the lack of proper running water and sewage," he said.

The Free Press hit the same roadblock. Provincial officials refused to disclose the number of cases on reserve, saying to do so would "harm relations" with the federal government. It took months through sources, documents and visiting remote communities to uncover which reserves have been hit hard by TB.

This is the first time this information has been made public.

***

Lac Brochet's Dene community lives in one of the most remote places in Manitoba - the northwestern corner of the province, about 200 kilometres north of Lynn Lake. A group of families broke away from Brochet to settle in Lac Brochet in the early 1970s.

Northlands First Nation was to be a remote haven where the Dene could hunt caribou, fish and live off the land. The isolation was supposed to preserve their traditional ways of life. Instead it exacerbated a flurry of health and social problems in recent years.

Few people have jobs, and there's no way off the reserve except to fly out for a medical appointment or brave the 13-hour, white-knuckle ride on the winter road to Thompson.

Denechezhe said people are cooped up in cramped quarters during the long winter, an invitation for TB to spread.

"It's just frustrating sometimes to even talk about it, and the more you talk about it the angrier you get," he said.

In 2001, Indian and Northern Affairs estimated there was a shortfall of 8,500 houses on northern reserves such as Denechezhe's and close to half of existing homes required renovations. Since then, the shortage has worsened, largely due to limited construction and a birthrate twice the Canadian average.

The reserve baby boom has left many young families homeless. In Lac Brochet, close to 1,000 residents live in 135 houses. People like Denechezhe are among the hidden homeless who crowd into relatives' homes because they have nowhere else to stay.

He and two of his children live in his mother's two-bedroom house with five other family members. The grey house looks nearly identical to the other dozen sandwiched close together in "central" Lac Brochet on a slope near the lake. The two bedrooms and one bathroom are the only divided rooms in the house, and there is little room left for people and furniture in the small space.

Denechezhe sleeps on the couch in the living room; his son and daughter sleep on mattresses on the living room floor.

The washer and dryer are crammed in front of one of two exits -- something that Denechezhe worries could be disastrous if fire broke out.

"I'm 42 years old, and I'm still living with my mom. It's not supposed to be like that," said Denechezhe, who works in the band office.

Half of Lac Brochet houses were included in a recent study and nearly half of those housed at least one person who had contacted TB. Most of the houses are overcrowded, with an average of eight people per household - four times the Canadian average.

"Size matters," said Linda Larcombe, an anthropologist and disease researcher with the University of Manitoba who studies the spread of diseases in First Nations. "It makes sense that (in) a smaller home with more people in it, your risk of contracting airborne and aerosolized disease is going to increase."

More than half the houses studied had visible mould. Medical experts say it takes a strong immune response to ward off TB germs, so an individual whose immune system is busy battling the effects of mould may not be able to fight off TB as well.

According to a 2003 Auditor General report, many on-reserves houses have mould problems due to improper maintenance, poor ventilation and construction and overcrowding. Some Lac Brochet houses have so much mould they are literally decaying from the inside.

Indian Affairs did not respond to repeated requests for an interview, but sent an e-mail statement saying it will spend about $75 million to improve on-reserve housing in the next two years, part of the economic stimulus package.

Northlands First Nation Chief Joe Dantouze said the problem hasn't been solved and the community doesn't have enough money to build new houses or repair others also rotten with mould. That draws criticism from some residents who claim houses are allotted based entirely on a social pecking order.

In Lac Brochet, residents refer to the area where the chief and a lucky few live as Beverly Hills, a row of bi-level houses atop a ridge overlooking the centre of town. Everywhere else, families crowd into small houses with two or three bedrooms and no basements.

Martin St. Pierre shines a flashlight in the crawl space under Stephen Tssessaze's house to illuminate a black wall so corroded by mould it's soft to the touch. The beam of light uncovers a patch of long, white mushrooms growing from a crack in the foundation. Thin strips of last year's withered, slimy mushrooms appear to drip down the putrid wall.

St. Pierre does plumbing work for the band in Lac Brochet. He said he sees too many houses that should be condemned - including others just like this one on the west side of town. Here, St. Pierre said, houses are in a low-lying area where spring run-off drains into the crawl space where moisture gets trapped.

The gag-inducing sight of patches of fungi and pervasive rot is overwhelming, even for St. Pierre.

"When I come through a house like this and there's kids in there, you feel bad, you know? To live in a house like this..." St. Pierre said.

Tssessaze lives with his two young boys and his girlfriend. The pungent stench of damp decay is unmistakable. It fills your nostrils when you walk through the front door. Tssessaze said his kids get sick a lot and he often has trouble breathing. He peers at the white fungi in the underbelly of his house, before a solemn look envelops his face.

"It's too much, right?"

jen.skerritt@freepress.mb.ca

Government would rather

you didn't read this series The Free Press began an investigation into TB on Manitoba reserves in spring 2008, but the story stalled when provincial officials refused to disclose the number of cases.

Free Press health reporter Jen Skerritt's Freedom of Information request for the number was denied. Provincial officials claimed releasing it could harm its relationship with the federal government which is responsible for health care on reserves. The province's ombudsman upheld that decision.

The ombudsman's March 2009 report said federal health officials and some First Nation chiefs were concerned releasing the information would jeopardize their ability to manage the infectious disease. Federal officials also argued the information could stigmatize the communities.

"It's an excuse they're using to cover up inadequacies," said Dr. Earl Hershfield, former director of the province's TB control program.

It took months of in-depth research - via sources, documents and visits to remote communities -- for the Free Press to discover which reserves have been hit by TB and why. This is the story.

Visit the interactive TB website at

winnipegfreepress.com/tb to:

"Ø Watch videos and see slideshows

from Lac Brochet;

"Ø Scroll through 100 years of TB history

in Manitoba;

"Ø Click on interactive maps to learn

about TB in other parts of the province.

Republished from the Winnipeg Free Press print edition October 31, 2009 H1