Virus shows need for race-based data

Maybe the most disturbing element of Leonard Rodriques’s heartbreaking story was his reluctance to seek help at the local hospital for fear of being mistreated the way blacks are in the United States.

Rodriques, a black personal support worker in Toronto’s long-term-care system, was eventually persuaded to go to the emergency room. But then he was sent home with some antibiotics. He died there two days later of COVID-19.

The hospital has since responded that it goes to great lengths to ensure equitable treatment.

But in fact, we don’t know exactly what kind of race-based dynamic might be playing out in Canada during the pandemic — because we won’t look. We don’t know if Rodriques’s distrust of the health-care system was based on a pattern of systemic racism, or just a gut feeling he had. And we don’t have the data to figure out which groups of people in Canada are being hit hardest by the virus, beyond basic information on age and gender.

Because we don’t have the facts, we have a debilitating blind spot when it comes to how public-health authorities, policy-makers and individuals alike are able to deal with the spread of the virus.

The lack of race-based data has been pointed out many times before, but the pandemic has made the need even more urgent — Rodriques’s story suggests that for some, it is a matter of survival.

The government’s slow walk toward collecting data by race needs to pick up speed. If we don’t have much of a systemic problem that is playing out in the pandemic, let’s say so and alleviate the fear. If it turns out we have a problem — and it certainly looks like we do — let’s name it, probe it and then set to fixing it.

“You have to have all of the data, even if it reveals the ugly parts of this country,” says Matthew Green, the New Democratic MP from Hamilton Centre.

Green paid tribute to Rodriques on Tuesday in the House of Commons and followed up with a question for the federal government that adeptly drew a line between Rodriques’s incredibly sad death and the lack of data required to understand to what extent his treatment in the healthcare system — from his professional exposure to the virus as a PSW to his discharge from the hospital — was a symptom of systemic racism.

“Will this government make it a legal requirement to collect race-based data related to COVID-19?” Green asked.

Green says the federal government should use the Canada Health Act to require collection of disaggregated data based on race to determine to what extent visible minorities are dying of the virus and to what extent they are put in harm’s way, often as the front-line workers or the families living in crowded neighbourhoods where community spread is now a problem in Montreal and Toronto.

The federal Liberals have signalled that they’re open to collecting data based on race. Prime Minister Justin Trudeau said in an April speech that he wanted disaggregated data. Social Development Minister Ahmad Hussen insisted on race-based details from those who receive the $350-million Emergency Community Support Fund for vulnerable groups. But while

Health Canada is talking to the provinces, it doesn’t ask for any specific information on race or ethnicity.

And Statistics Canada is scrambling in real time, using crowdsourcing and unconventional methods to figure out how the virus and its fallout are affecting vulnerable groups. So far, it has found that Indigenous communities are having a hard time making ends meet, given mass unemployment. Immigrants are more concerned than others in Canada that COVID-19 will make them sick and also lead to social disruption. And it has added questions to its surveys to find out more about ethnocultural groups.

None of that has so far resulted in relevant data on the spread of the virus. Meanwhile, personal support workers — more often than not women of colour — are heading to work without adequate protective gear, and crowded lowincome urban neighbourhoods are at high risk.

It means policy-makers are designing supportive programs based on thin information.

But the urgency for disaggregated data comes more at the individual level as provinces gingerly lift restrictions and open up the economy.

Each Canadian has to make new day-to-day decisions based on their own assessments of risk. Is it safe to go out? Should they wear a mask? Should they demand more protective gear at work? Should they find a way to stay apart from their families when they come home from work? How will they make the decision that is right for society at large but doesn’t work for taking care of their families?

If they’re sick, like Leonard Rodriques, should they turn to the medical system for help?

As Green puts it, “We want all the information we can get” so that the best decisions can be made. Without it, he says, we risk compounding the systemic racism that already exists.