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Tracey Thompson sits outside her Toronto home on April 22. Thompson, who has suffered debilitating effects from long COVID, is terrified of catching the virus again and has had to rely on crowdfunding to pay her bills as she's been unable to work.Galit Rodan/The Globe and Mail

Tracey Thompson felt a few seconds of relief when a cardiologist told her there was something going on with her heart.

For months after a presumed March 2020 COVID-19 infection, Ms. Thompson had been dealing with escalating symptoms: weakness, difficulty breathing, a heart arrhythmia. It wasn’t until summer that it became clear to her that she had long COVID – a condition, still poorly understood by the medical profession, in which symptoms persist months or years after an initial infection is resolved.

By the time of the heart checkup, several doctors had dismissed her concerns as being “all in her head.” It felt validating to hear someone acknowledge something was wrong.

But that feeling was short-lived. The cardiologist didn’t agree that long COVID was to blame. Instead, she said, she suspected Ms. Thompson’s heart issues were being caused by cocaine use. Ms. Thompson, who is Black, was stunned by this assumption – she doesn’t use drugs, or even consume alcohol or coffee.

In the months that followed, she learned of other Black women who had been similarly doubted or stereotyped when presenting with long COVID symptoms, like joint pain and fatigue. “You were very much in the category of, ‘I’m sure they’re just trying to get drugs’ or, ‘They don’t want to go to work, you know,’” Ms. Thompson said.

Stories like Ms. Thompson’s, of racial bias in the medical system, are driving some researchers to call for more diversity in studies of COVID-19’s long-term effects.

Black, South Asian and Indigenous people have made up the largest proportions of cases of COVID-19 and COVID-related hospitalizations in many parts of the country, and some researchers theorize that these groups also have higher rates of long COVID. But without a lab test to diagnose the syndrome, and with barriers to treatment among racialized and immigrant communities, advocates worry that studies into long COVID may be leaving out the people who are suffering the most.

Long COVID is affecting thousands of Canadians. These researchers are racing to understand its risk factors, treatments

The current understanding of long COVID in Canada is based largely on the patient population with the best access to the health care system: those who were confirmed to have COVID-19, and who were treated in hospital or were seen by doctors within two weeks of the onset of their symptoms, explained Sonia Anand, a professor of medicine and epidemiology at McMaster University and the principal investigator in the COVID CommUNITY study, which looks at the experiences of South Asian and First Nations populations during the pandemic.

Then there are the people who might never report their long COVID symptoms – maybe because they face language barriers, can’t take time off low-wage work to seek treatment or don’t trust the medical system because of previous experiences with discrimination.

“If we don’t hear from the folks who maybe never even told a primary care physician that they had symptoms, then we miss out,” she said. The same structural barriers that have made accessing COVID-19 tests and vaccines difficult for these populations in the past two years could also be blocking long COVID treatment.

Last year, Dr. Anand applied to the Canadian Institutes of Health Research (CIHR), Canada’s major federal funding agency for health research, in search of a grant to do a study on long COVID, piggybacking on the cohort she had already recruited for the COVID CommUNITY study. But she was turned down.

“COVID has shone the light on the fault lines in our health care system, but how quickly the funders are coming up to speed and how that message is being translated in how they prioritize is a big question mark for me,” she said.

Even outside of COVID-19, racial bias in Canada’s medical system is well documented. In 2020, a report from the Alliance for Healthier Communities in Toronto summarized many challenges Black Canadians face in getting care, including difficulties in accessing pain-management medication and lower screening rates for cancer. There is well-founded mistrust of health care among Indigenous populations, too: a January study published in the Canadian Medical Association Journal found that, in Alberta, First Nations patients were less likely to have their symptoms rated as severe by emergency room triage nurses. “This may reflect systemic racism, stereotyping and potentially other factors,” wrote the study’s authors.

The CIHR has spent $17.7-million funding 41 projects focusing on long COVID, with future spending planned, according to David Coulombe, a spokesperson for the agency.

One of the studies CIHR is funding is the RECLAIM trial, in which researchers at the University Health Network in Toronto will study the effectiveness of various treatments for long COVID on 800 to 1,000 participants. One of the study’s leads, Angela Cheung, said recruitment hasn’t yet begun.

Dr. Cheung is also a co-lead on the Canadian COVID-19 Prospective Cohort Study, which is looking at early to two-year outcomes for people who had COVID-19. Part of the analysis will be focused on those who developed long COVID. The group has four patient cohorts: those who were not hospitalized, those who were hospitalized but did not get admitted to intensive-care units, those who were in ICUs and those who never tested positive but probably had COVID-19.

The composition of the cohorts is telling: the first cohort, in which illnesses were milder, is three-quarters white. In the groups that were hospitalized, larger portions are racialized.

In the past two years, racialized communities have logged disproportionately high rates of hospitalizations for COVID. In Toronto, for example, 65 per cent of those hospitalized for COVID until the end of 2021 identified as racialized, whereas the 2016 census found that only 52 per cent of the city’s residents identified as such. According to Toronto Public Health and Peel Public Health, about three-quarters of all COVID-19 cases logged in those health units until the end of 2021 were among racialized people.

One reason researchers believe there may be high rates of long COVID in Black, South Asian and Indigenous populations is that studies suggest people who were hospitalized for their COVID-19 illnesses or have diabetes are more likely to develop lasting symptoms. Data have shown that those three racial groupings have the highest rates of diabetes in Canada.

Many who are leading studies on long COVID in Canada have turned to online support groups – in particular the Facebook group Long Covid Canada, which has more than 3,300 members – to find participants. But Nadine Akbar, research chair in community connection at Humber River Hospital, sees online communities as a skewed sample. She has had to look elsewhere to find participants for a small study her hospital is conducting on racialized patients with long COVID.

“We know that generally, these groups don’t include a lot of diversity and they’re typically run by people who are non-BIPOC, who are predominantly white. And then when you see who joins these groups and who leads these groups, I think a lot of racialized communities just kind of feel like they don’t really belong here, or it’s not as welcoming,” she said.

Prem Gundarah, a son of Punjabi immigrants, said he didn’t know anyone in his family or cultural community who was afflicted by the same symptoms he had following a January COVID-19 infection. He only started to understand what long COVID was after he went online.

Mr. Gundarah used to run 10 kilometres a day without issue. The 21-year-old was in peak physical condition until he got COVID-19. The illness itself was relatively mild, but long after the virus had left his body, Mr. Gundarah began experiencing debilitating joint pain. On good days he could walk for an hour; on bad ones he would struggle to get out of bed, his knees and ankles badly swollen. Tinnitus made his ears ring.

He spent hundreds of dollars out of pocket to see a chiropractor, physiotherapist and massage therapist, but the symptoms persisted. He saw a doctor, who suggested the symptoms were anxiety-related and prescribed him anti-anxiety medication.

It was through discussion threads on Reddit and Facebook that he realized he likely had long COVID and found the language to better advocate for himself. Doctors now recognize his condition as being more than mental, and he has been referred to a rheumatologist. He wonders if there are others in his community who are suffering but haven’t even considered that their symptoms might be connected to COVID.

Driven by similar concerns, Dr. Akbar and her team have put up flyers in community health centres, malls and churches to reach racialized communities, which she suspects have been highly affected by long COVID but aren’t being studied. Ms. Thompson is participating in the Humber River Hospital study and has been assisting the team with finding others like her.

Ms. Thompson, who worked as a chef before she got sick more than two years ago, said she faced a “long, drawn-out struggle to get care” – in part because she didn’t have a family doctor for the first several months of her illness. She suffered insomnia for months and once was so fatigued she got stuck in her bathtub for four hours. She began preparing notes for her loved ones, including logins to online accounts, because she was so certain her death was imminent.

People living with long COVID across all races have described having their symptoms dismissed as products of anxiety, but Ms. Thompson said there is an added layer of skepticism levelled at Black patients.

“I do think that it has affected and impacted my ability to get care in a way that in Canada we don’t like to talk about,” she said.

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