Early signs suggest race matters when it comes to COVID-19. So why isn't Canada collecting race-based data?
Canada has 'no plans' to collect race-based data amid COVID-19 despite signs of disparities in U.S.
How do you solve a problem you can't see?
That's the question several researchers and health professionals across the country are pressing Canada to consider as the battle against COVID-19 wages on. The fear: the virus will kill overwhelming numbers of populations we simply aren't paying attention to.
There's a blind spot in this country's approach to combating the virus, these advocates say, and it's one that for many could make the difference between life or death: race-based data.
"We know that people who are poor, people who are homeless, Indigenous populations and also our refugee, immigrant and racialized populations, they're more likely to have chronic diseases because chronic diseases go with poverty and they go with low income," said Dr. Kwame McKenzie of the Toronto-based Wellesley Institute.
When resources are stretched, McKenzie said, people with chronic diseases may not find themselves at the top of the list for intensive care and ventilators. He said that in some cases, people with underlying conditions have been denied access to those resources during the pandemic, with the priority going to those deemed more likely to survive.
"You have to collect the data to do good medicine."
Canada doesn't track race or ethnicity as part of its data collection around COVID-19. And that dearth of data has come into sharp focus as Canadians look across the border to their southern neighbour, the United States, which has emerged as the hardest-hit country in the world, with a death toll surpassing 36,000.
'No plans' to collect race-based data in Canada
In parts of the U.S., an overwhelming number of black and Latino residents have died of the virus compared with other groups, even where they are a minority. Consider Chicago, where black residents are 30 per cent of the population but make up more than 70 per cent of the COVID-19-related deaths.
In New York City, more Latino and black residents have died of the virus than their white or Asian counterparts, according to figures released by New York's health department, which cautions its statistics are not comprehensive. Indeed, in the 12 states reporting race and ethnicity data around COVID-19, black residents were found to be 2.5 times more likely to die of the virus than the general population, according to the public policy research group APM Research Lab.
Regardless of race, ethnic or other backgrounds. They're all equally important to us.- Dr. David Williams
But as to whether Canada intends to collect that sort of data, a spokesperson for chief public health officer Dr. Theresa Tam told CBC News this week, "There are currently no plans to add more social determinants of health (such as education or income) as risk factors to the case reporting form used for the collection of COVID-19 data."
Asked last week if Ontario planned to collect such data, the province's chief medical officer of health, Dr. David Williams, replied that the groups identified to be most at risk are the elderly, people with underlying conditions and those with compromised immune systems.
"So those are all priorities to us, regardless of race, ethnic or other backgrounds. They're all equally important to us," Williams answered.
'It's really concerning'
Ontario's Anti-Racism Act allows the government to mandate race-based data collection across various sectors, but the province has said health-care providers aren't authorized to do the same because of privacy considerations.
Williams's response was met with criticism from several health-care advocates and professionals, including Suzanne Obiorah, the director of primary care at Ottawa's Somerset West Community Health Centre.
"It doesn't allow us to fully understand the impacts of COVID in vulnerable communities. And then it doesn't help us to organize ourselves to target vulnerable communities in a focused way."
Poverty means marginalized groups are more likely to have to continue working through the pandemic, often on the front lines as cleaners, bus drivers and at grocery stores, she and others point out.
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With about half of Canada's COVID-19-related deaths taking place inside care facilities, Obiorah says, federal and provincial governments have been able to rework their approach to prioritize the senior population.
"But what informed us to be able to do that was data," she said.
Alberta acknowledges some 'systemically disadvantaged'
Obiorah and a group of black medical professionals are now petitioning for officials to immediately mandate the collection of race and socio-demographic-based data.
"Without an evidence base, the inequitable experiences of marginalized populations are dismissed as anecdotal and interventions are not prioritized," they said in an open letter to the Ontario government..
Last week, Alberta's chief public health officer committed to begin looking into race-based data collection. "We know that certain groups of people are systemically disadvantaged," Dr. Deena Hinshaw said, adding that it could work with First Nations groups to pull specific data from the provincial system.
During the H1N1 pandemic in 2009, Indigenous people in Canada were six-and-a-half times more likely to end up in intensive care units, Toronto-based pediatric infectious disease specialist Dr. Anna Banerji told CBC News.
At the time, Health Canada sent dozens of body bags to some of the hardest-hit reserves in Manitoba, as part of a shipment of hand sanitizers and face masks. The federal agency later apologized, but the action left some members of the community feeling they simply weren't a priority to Canada.
"Is the body bags a statement from Canada that we as First Nations are on our own?" Wasagamack Chief Jerry Knott asked at the time.
"Knowing that these communities are at higher risk for multiple reasons should be a call for action," said Banerji.
"We say that this virus affects people equally. It really doesn't. It affects people who don't have the resources really to not work and to buy gloves and to take care of themselves."
With files from Chris Glover