In 787 days since the first detected case of COVID-19 in Alberta, the number of people still living with the effects of the coronavirus after the initial two-week period is unknown.
Studies estimate anywhere between five and 30 per cent of people who catch COVID-19 will develop long COVID. Alberta Health Services uses 20 per cent as a general reference point.
“But the estimates vary with the population considered, and there is evidence that the incidence of long-lasting symptoms may be changing with high vaccination coverage, and also with changes in the virus,” AHS said in a statement.
Provincial data shows 565,052 people have tested positive for the virus via PCR test, but the actual number of people who have had a bout with COVID-19 is likely much higher.
Tara Moriarty, director of the University of Toronto’s infectious diseases lab, estimates 61 per cent of Albertans — or 2.67 million people — are likely to have caught COVID-19 between Dec. 2, 2021, and March 22, 2022.
Moriarty built her estimates by working backward from COVID deaths data in Quebec — the Canadian province with the most robust testing and reporting data.
“This method depends on back-estimating actual infections from reported deaths,” she told Global News. “These numbers are the most generous interpretation of what percentage of us have been infected.”
She told Global News her estimates are consistent with other epidemiologists across the country, who are using other methods but haven’t publicly released their figures.
Moriarty is releasing her estimates on social media to provide a better picture for Canadians, given how many provinces like Alberta placed widespread restrictions on access to public PCR testing.
“We really have no sense of what’s going on, in terms of a lot of the changes in the protections and everything else that are being proposed and adopted in different places,” she said.
“I think the onus is actually to provide the evidence justifying those changes and presenting it clearly to people who live in different provinces. And there hasn’t been evidence that’s being presented.”
Her estimates mean between 133,000 and 800,000 people could develop long COVID as a result of infections from the fifth and sixth waves in Alberta.
She also estimated more than half of all Canadians could have caught COVID in the past three months, which could mean up to 15 per cent of Canadians have long COVID symptoms.
Even Moriarty recognizes her estimates may be high.
Recent data from the United Kingdom of people self-reporting long COVID symptoms shows 1.7 million — nearly three per cent — Britons are still symptomatic 28 days after being infected. Some 780,000 — or one in 83 — people in the U.K. have had symptoms for more than a year. And the island nation added a third of a million long haulers during the Omicron wave (up to February).
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Preparing for a different kind of wave
That’s a large, looming shadow of the pandemic that governments and health officials will be compelled to address, according to one Carelton professor.
“I suspect that policymakers will try and basically make use of the tools that they have right now,” Jennifer Robson, associate professor of political management at Carleton University, told Global News.
“That’s one way to tackle it. But that’s not necessarily actually getting at the fundamental issue here, which is a certain inflexibility of our policy supports and systems.”
Rather than create another program with narrowly-defined eligibility and limited terms, Robson thinks the various orders of governments should look at a third, more flexible approach to support individuals with a syndrome that can have a wide range and tenure of symptoms.
“If we’re not thinking about that third basket here of saying the reason that we want to have adequate, flexible, responsive income supports and adequate, flexible, responsive health and social services is because working-age adults who have acquired long COVID, they are still really valuable members of our shrinking labour market,” she said.
“And so if we’re not doing what we can to maintain their opportunities for labour market attachment as and when they’re available, then we’re taking a really short term lens here.”
Robson said other post-viral syndromes like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be instructive in what living, working and seeking supports is currently like and can be improved.
“It seems to be that same biological connection to a viral infection and similar problems in terms of EI being too short, (Canada Pension Plan disability benefit) being hard to get and really discourages you from working – even if and when you could – long-term disability insurance providers who have disbelieved claims in an effort to restrict access to benefits.”
She said pre-existing conditions in Canada’s labour market – an aging workforce whose replacement by immigration and automation isn’t making up for the retirements – is another reason for governments to step in and enable those with long COVID to be supported when the waxing and waning symptoms don’t allow them to clock a 40-hour workweek.
“One of the worst possible things is that you’re able to work a bit, but something happens and your labour market attachment is interrupted and that leads to long-term disruption,” the Carleton professor said. “It’s costly to the individual, it’s costly to the employer, it’s costly to all of us.”
In December 2020, disability rights advocate Imani Barbarin posted a Tiktok video calling COVID-19 a “mass disabling event,” adding society is “not prepared for it, at all” while referring to accessibility standards.
Robson acknowledged the sudden onset of the pandemic and rapid changes in scientific understanding of the coronavirus resulted in imperfect policy being created on the fly. But she said one common mistake has been a lack of anticipation for what could be predicted to come next.
“In some cases, it’s been impossible to anticipate. But in the case of long COVID, we can see it coming down the track right at us. And so continuing to just focus on debating should mask mandates end now or yesterday, should we still require proof of vaccination? I feel like we are frittering away valuable time trying to declare the pandemic is over, when in fact there is this longer-term challenge that is headed right toward us.”
The long road ahead
With no physical deformities as a result of her bouts with COVID-19, Charlise Bruchet looks like any other 15-year-old.
But her plans to become an engineer and then attend law school will unfold differently than she expected.
“There’s been some courses I can’t take that I would have liked to take to help me with that — that have been too heavy,” Charlise said. “It’s been hard because I have to put a lot more effort into school now just to get my brain fog to kind of clear up and focus on things.”
But one of the challenges she has to regularly face is not being believed that she suffers from long COVID.
“It’s very upsetting, honestly,” she said from her home in Chestermere, Alta.
“I’ve lost friends who I’ve been friends with all of my junior high – so over three years – and it really hurts when you’ve been with someone for so long and that you thought they cared about you. It really hurts when someone thinks you’re trying to lie about an illness, when it’s already frustrating enough that I can’t do stuff that I love,” she said as a family pet lovebird chirped in the background.
The adversity has revealed to Bruchet who’s really in her corner.
“This has actually helped me find my closest friends,” she said. “I do have a couple of close friends who have been super, super supportive. You know, they watch me through the school day, make sure I’m doing OK and are there for me.”
Charlise also draws on daily support from her family as they’ve rallied around and provided an environment to best fit her varying energy levels. Younger sister Amber has also played a special role.
“Some days I get very frustrated, especially if something gets cancelled on me that I can’t do because of this (long COVID). She’s always there to support me and help me get through it and tell me that everything’s going to be OK,” Charlise said. “She’s been awesome.”
Continuing to be strong yet resilient and being an advocate for her daughter, Charlie’s mom says she will continue to be an advocate in a society that has become polarized by pandemic politics.
“What I want to show to her is that we’re going to stay resilient there. You know, there’s always solutions to problems,” Nina Bruchet said. “Learning about your body and your health is never a bad thing to do. So learning that at such a young age, it’s just a little more than I was thinking that she could handle because I thought that this pandemic was enough on them already.”
“I’m trying not to take it personally as well.”
Being one of the earliest Canadians to likely have developed long COVID, Hannah Wei’s experiences of the past two years are now a source of advice for people just developing post-COVID syndrome.
“One big piece of wisdom from myself and my co-researchers is to essentially pace yourself and not push to get back to either working or exertion,” she said, from her Ottawa home. “And I know this has been a mistake for somebody like me who loves to travel and loves to get into projects and situations that challenge myself.”
Recovery from COVID-19 and post-COVID can be exacerbated when people over-exert themselves, often by doing things they could easily do before catching the virus.
“We tell folks to stop, rest and pace and to manage their daily activities so that they stay within their thresholds.”
Wei also points to the past for lessons on what can be done for recovery from COVID-19 or post-COVID.
“For folks who have gotten sick recently, we encourage them to join support groups, and seek advice and support from people who are going through this at the same time and folks who came before them.”
This is part three of a three-part series on Long COVID. You can read part one here and part two here.
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