It smouldered for 40 years, then exploded

But the same hour the sanatorium cleared out, an aboriginal man walked into the outpatient department. He had far-advanced TB.

"In northern Manitoba, tuberculosis still smoulders slowly like muskeg fires. If outbreaks are not tracked down and stamped out one by one, a major problem could arise," Carey wrote in his last report as medical director of Clearwater Lake.

Carey was right.

TB simmered under the radar for 40 years and then, five years ago, it exploded. Outbreaks began to erupt on northern reserves where malnutrition, poor housing and crowded conditions created the perfect storm for an explosion of TB.

Manitoba now has one of the highest rates of TB in Canada because the disease has been allowed to spread rampant in the First Nations population. On some reserves, the TB rate is more than 100 times the national average.

"It was neglect," said Dr. Earl Hershfield, former director of Manitoba's TB program who spent more than 30 years at its helm.

"It's like anything else. The program is working so let's spend our money elsewhere and then the program is dismantled... it's the systems that fell apart."

The first major TB outbreak hit York Factory First Nation in 2004, where 23 people had active TB, in a community of just 400.

A second big outbreak hit Lac Brochet in spring 2005. It was so massive, 700 of the community's 960 residents had to be screened for signs of illness. Close to one-third tested positive.

By the end of 2005, northern health officials had eight remote communities on their radar as TB hot spots.

The cycle of infection hasn't stopped since then. Cases and clusters continue to crop up -- the number of TB cases reported in Manitoba between January and August 2009 increased nearly 25 per cent over the same period last year.

Two major TB outbreaks were recorded in the north in 2008, but provincial health officials, who cite privacy rules, will not identify the communities. A total of 28 people were infected with TB, according to data obtained through a freedom of information request.

The same poor living conditions that let Spanish flu and measles tear through reserves in the last century are now an open invitation for TB. The pandemic outbreak of Spanish flu in 1918 hit impoverished aboriginal communities hard. In Norway House Cree Nation, nearly one in five people died. In the late 1940s, a fairly widespread measles epidemic swept through northern First Nations communities in Manitoba, killing 34 people in Brochet in 1947.

"Do we learn from our mistakes? Do we learn from history? The answer may be no. We repeat them," said researcher Paul Hackett, who studies TB in First Nations. "We tend to think we've defeated things, we've solved all our problems and we're onto the next problem. But sometimes they're in the background.

"It's just sitting there waiting to reactivate."

The spike in cases brought back sad memories of a time when many First Nations people died of TB. That dark legacy is partly why some people, such as Alfonse Denechezhe, a Lac Brochet man who in 18 months missed 17 appointments for TB treatment, still fear seeking medical treatment.

The province's first sanatorium opened in Ninette in 1910, but First Nations were left out of TB care for nearly 30 years due to bureaucratic squabbles between the federal and provincial governments. While white patients from across Manitoba were sequestered in sanatoriums and put on regimes of bedrest, calorie-rich diets, fresh air and sunlight -- the only treatment available in the first half of the century -- First Nations people died of TB in droves on reserves and in residential schools.

By 1931, TB experts discovered the death rate among Manitoba First Nations people was 15 times higher than the rest of the population. Even then, overcrowded homes and poor living conditions on reserves gave TB an open invitation to spread rapidly. The federal government made sanatorium care available for aboriginals in 1939, but due to bed and staff shortages in the north, some died before their TB was detected. Others' illness reached advanced stages while they awaited treatment.

Many aboriginal patients who were taken away to sanatoriums never returned. Relatives have no idea where their bodies are.

"It's probably not only me, but a lot of people are scared to go (to the nurse) just to get tested," Denechezhe said. "I'm pretty sure a lot of people are avoiding getting tested."

Fear and misconceptions about TB make it difficult for health workers to convince patients they must show up for medical appointments and take the full course of medication.

Health officials are extremely concerned about patients who don't finish all the medication or take it intermittently, because that increases their odds of relapse or the TB becoming drug-resistant and much harder to treat.

"Most of us had to have a mask on, to cover ourselves when we're coughing and stuff like that. But we didn't all follow through with everything, you know? We don't live like that," Denechezhe said.

"We don't always follow the rules. We go home and throw away the mask and that's it."

Republished from the Winnipeg Free Press print edition October 31, 2009 H4