“It’s like a silent killer. You don’t know what it is that’s out there, what’s causing you to get sick,” said Chief Allan Adam , leader of Athabasca Chipewyan First Nation since 2007. Adam was in Ottawa last week campaigning, once again, to get answers for his community.

What they do know is that there are still elevated rates of cancer in the northern Alberta community. They also know that nothing's been done to address the issue, despite community leaders asking for further investigation for years.

It’s been more than a dozen years since the metaphorical alarm was first sounded, and yet the residents of Fort Chipewyan still don’t know what’s killing them.

Last month, he posted his first entry on his blog, outlining how he was losing his battle with a rare form of bile-duct cancer called cholangiocarcinoma, which is only supposed to affect one in 100,000 people, according to American statistics.

"My dad, my sister, my aunt, a lot of my cousins have it, my friends' families ... A lot of them have died of cancer, and some of them are dying now of cancer," he said in 2006.

Thirteen years ago, Warren Simpson, a member of Athabasca Chipewyan First Nation, told CBC News how afraid he was that he’d die of cancer from living in that community. He said he’d been lucky enough to fight off cancer the first time he was diagnosed, but he worried that he wouldn’t be so lucky if there was a second bout.

On its route, the river flows through Canada’s oil patch, giving rise to the theory that the oil-and-gas industry is responsible for the illnesses, having poisoned people for years by contaminating the environment. Government bodies and researchers have challenged that theory, leading to a call for a new more conclusive health study that could provide real answers.

Athabasca Chipewyan First Nation, Mikisew Cree First Nation and the hamlet of Fort Chipewyan are all situated near the mouth of the Athabasca River, where it flows into Lake Athabasca, in the province’s upper northeast, after traversing more than 1,200 kilometres from its source in the Columbia Icefields.

While this study confirmed there was a problem, a full investigation by Health Canada would be needed to sort out what was causing it. This comprehensive baseline health study was recommended by the Alberta Cancer Board back in 2009 but it has never been completed.

“These increases were based on a small number of cases and could be due to chance or increased detection. The possibility that the increased rate is due to increased risk in the community, however, cannot be ruled out,” the report reads.

Rates were particularly high in cancers of the blood and lymphatic system, biliary tract and soft tissue.

Public attention waned as the cancer board did its research. When the findings were released in 2009, they showed cancer rates were indeed higher in Fort Chipewyan than what would be expected. In a community of roughly 1,200 people, the study found, you would expect to see 39 cases of cancer. Instead, it found 51 cases, a difference of 30.7 per cent.

After O’Connor raised concerns, the Alberta Cancer Board — supported by the province’s governing health authority, Alberta Health Services —​​​​​​​ conducted a comparative survey to see whether he was right.

Simpson only spoke to reporters about cancer in his community because a Fort McMurray family doctor started sounding the alarm in 2006. Dr. John O’Connor was worried about the number of cancer cases he was seeing in Fort Chipewyan — especially cases of bile duct cancer, or cholangiocarcinoma — as he treated patients there remotely.

Chief Adam says he wishes Simpson were an exception, but 10 other people have passed away in the last few months, and seven of them were from various forms of cancer.

He wanted to write the blog “mostly to give awareness of so many damn cancers that we suffer in Fort Chipewyan,” he wrote on Facebook. “Love you all for your support, and let’s pray for all the people with cancer.”

“The only reason they don’t want to do it is because of the magnitude — how big this is going to be,” Adam said.

That’s why Chief Allan Adam was back in Ottawa last week, pounding the pavement, speaking with different government agencies and departments, trying to force the Liberal federal government to make good on that promise made a decade ago.

Health Canada directed all questions to Indigneous Services Canada, which provided a statement to National Observer saying, “Since 2009 many efforts have been undertaken to bring partners together to create a framework for the Fort Chipewyan Regional Baseline Health Study, but consensus has yet to be reached.”

The Indigenous Services Canada spokesperson directed all questions related to the delay to the leadership of the First Nations.

“Both federal and provincial partners have made commitments to fund this work since 2009. Indigenous Services Canada, Alberta Health and the communities continue to work together to move forward to develop a framework,” the spokesperson said by email.

Ultimately, Adam said, the delay over the baseline study has come down to disagreement over who would have control over the research and whether industry could be part of the process.

“We don’t want industry involved,” Adam said flat out.

Furthermore, failures to consult with the communities have fishtailed previous efforts to conduct such studies, leading the communities to mistrust the intentions of government.

Public attention flared up again when influential environmental scientist David Schindler dug into the water quality of the Athabasca River.

His study, published in 2010 by the Proceedings of the National Academy of Sciences journal, confirmed that oilsands developments had contributed heavy metals, such as mercury, arsenic, lead and cadmium, and other contaminants — toxic even in low amounts — to the region’s waterways.

It seemed like the region’s residents had two pieces of the puzzle: a study proving they were indeed getting sick and a study showing toxic contaminants in their water supply.

Many refuted and cast doubt on Schindler’s findings, including a set of studies published seven years later by William Shotyk, a professor of agriculture and environment at the University of Alberta. Shotyk looked at silver, cadmium, lead, antimony, thallium, arsenic and lead, and found that the presence of these elements in the waterways was no different upstream from oilsands projects when compared with downstream testing.

Two research studies. Two very different conclusions about contamination. Both sets of research have seen plenty of criticism —​​​​​​​ criticism that is generally and predictably divided between those who oppose oil-and-gas development and those who support it.

The sources of research funding can be divided along similar lines. Schindler’s research was funded in part by the Tides Foundation (donations from this American charity are at the centre of conservative claims of a foreign-funding conspiracy).

Shotyk's research was paid for by the Canada's Oil Sands Innovation Alliance and Alberta Innovates, both organizations whose express interest is innovating the oilsands.

After Schindler had published his study, without any movement on the baseline health study, the two First Nation communities of Athabasca Chipewyan First Nation and Mikisew Cree First Nation took matters into their own hands. They pooled their resources to begin funding research that the communities could be confident in. With some additional funding from Health Canada, a three-year, $1-million study got off the ground.

The research project was led by Stephane McLachlan, a professor at the University of Manitoba. He remembers being approached by community leaders specifically because he came from outside the province, which he believes helped build some trust automatically.

“[The study] was this attempt to bridge the science and the Indigenous knowledge that came from doing interviews and focus group discussions and talking with people and getting to know people over the years,” McLachlan said.

Based on the grassroots interviews, McLachlan quickly realized the fear of not knowing what was making people sick was influencing how people lived, right down to fear of their traditional foods.

“A lot of those kinds of drivers were preventing people from going out on the land, making people question the safety of the traditional foods. And so that had implications, obviously, for how people engage with the environment,” McLachlan said.

In 2014, while McLachlan’s study was underway, Dr. O’Connor travelled to Washington to testify before the U.S. Senate in hearings on the Keystone XL pipeline. In his testimony, O’Connor stated that he believed elevated cancer rates in Fort Chipewyan were linked to chemicals leaching into the Athabasca River from the oilsands.

The Alberta government rejected that claim, stating there was "insufficient evidence to link the incidence of cancer in Fort Chipewyan to oil sands operations" and arguing that rates of cancer are "within the expected range."

Health Canada threatened to suspend O’Connor’s medical licence for raising undue alarm.

Dr. John O'Connor in the Fort McKay medical centre. (Andrew S. Wright)​​​​​

Then, later that year, McLachlan released the findings of his study.

The research measured contaminants not only in water but also in beavers, ducks, fish, moose and muskrats — animals consumed as part of a traditional diet for those who continue to live off the land in the Peace-Athabasca Delta. He concluded that the animals contained high concentrations of pollutants such as carcinogenic polycyclic aromatic hydrocarbons and heavy metals such as arsenic, mercury, cadmium and selenium.

All of these are byproducts of extracting and upgrading bitumen. Arsenic in particular has been linked to increased risk of biliary tract cancer.

Despite these findings, McLachlan watched in horror as governments waited out the news cycle and again conducted no further investigation.

“It’s just too easy for a government and industry because I think it was quite deliberate on their part,” McLachlan said. “They could have engaged with the research. They could have engaged with the leadership. But they knew that that would just create unwanted attention. And so what they did is —​​​​​​​ they knew that whatever that media cycle is, one or two weeks, whatever it is —​​​​​​​ they just hid in the weeds and waited for it to blow over so they could just continue with business as usual.”

McLachlan says he hopes that in years to come, no matter how long it takes, the Canadian government is held accountable for its inaction.

Also in 2014, Alberta Health Services conducted a follow-up cancer survey to the one done in 2009. It concluded that the overall cancer rates were no longer especially high, but the region was seeing continued elevated rates of biliary tract and newly elevated rates of cervical cancer. The latest update to the survey is expected to be released early in 2020, according to AHS.

One last blast from O’Connor raised the issue in the media again, in 2015, when, despite remaining in good standing with the medical community, O’Connor was fired from the position he held with the local health authority, which employed him to care for the people of Fort Chipewyan.

O’Connor no longer works in the northern community but continues to keep tabs on what goes on there. With all the attention over the years, O’Connor said he can’t fathom how nothing has been done to try to ameliorate the situation in Fort Chipewyan.

“I’m extremely frustrated. I’m beyond anger. I was hopeful when the NDP got into power, but that hope was dashed. The economy and other issues took precedence,” O’Connor said.

The NDP, now the official opposition in Alberta, did not respond to a request for comment.

Since 2015 when O’Connor was fired, there’s been radio silence on the illnesses in Fort Chipewyan and surrounding communities. There is still no baseline health study to answer people’s questions about what is going on.

However, over the course of this battle for Health Canada to conduct a baseline health study, the Oil Sands Monitoring Program was established to keep tabs on any possible contamination from the industrial area. The program is a joint effort between the federal and provincial governments. Its most recent study, released in 2018, found increased presence of aluminum, copper, iron and lead in the Athabasca River, surpassing water safety guidelines. It also found an increased presence of arsenic in the Athabasca’s tributaries.

The report said these increases were not directly linked with upstream oilsands projects, but that in the Muskeg River, one of the tributary sources, that land-clearing associated with oilsands mining was believed to have played a role in increasing contamination.

National Observer asked to speak with the co-lead of the Oil Sands Monitoring Program, scientist Monique Dube, who works in Alberta Environment and Parks, but the interview was declined by the departmental communications team, citing scheduling conflicts.

When reached for comment, AHS did not offer any suggestion that anything else was being done on their part to calm community concerns or address the issue. A request for an interview was made, but they made no one available.

“At a minimum, this comprehensive health study that we've been calling for and demanding, over the last 15 or 20 years, needs to be done,” McLachlan said. “It needs to be done in a way where [the First Nations are] full partners in that work. That they have ultimate say in terms of the nature of the work, and the focus of the work, and ultimately how the outcomes are shared.”

The stress and the pain of having all of this go on for years has meant that Chief Adam is frustrated beyond belief. Talking about it isn’t easy.

“Until we do a community baseline study, all of these will just be questions,” Adam said. “It gets frustrating as a First Nations leader. You know, you’re always out there advocating and people are always looking at you saying, ‘Here comes trouble, again.’ Well that’s not the point, right? We’re trying to work together here and it’s not our lifestyle that’s causing all of these health problems.”