An elderly woman is helped to the entrance to the COVID-19 test centre at the Embassy Grand Convention Centre in Brampton, Ont., on May 6, 2021.Fred Lum/The Globe and Mail
Brampton, Ont., was one of the Canadian cities hit hardest by COVID. Winnipeg and Regina, too, had high infection rates. And yet, the number of publicly funded long COVID clinics in these places, and many others across the country that saw large case counts, is zero.
Although the existence of long COVID – which causes lingering and sometimes debilitating health problems – is well established, specialized care for sufferers is scarce. Across Canada, an estimated 1.4 million people, or nearly 15 per cent of those who have been infected, have experienced long COVID, also known as post-COVID condition. Yet public clinics dedicated to caring for patients with this condition currently exist only in five provinces, concentrated largely in urban centres, according to a report last month by the non-profit Canadian Agency for Drugs and Technologies in Health (CADTH).
Through a survey of health authorities and professionals, conducted in November, CADTH found a total of 25 clinics or networks of clinics in Canada, all located in B.C., Alberta, Ontario, Quebec and New Brunswick. Although responses were not given for Nova Scotia and Nunavut, at the time of the survey, no clinics were found in any other provinces.
The paucity of these specialized clinics points to the enormous challenge of supporting the large numbers of patients with this new chronic condition. And some experts say it emphasizes the need to ensure equitable access to long COVID care.
“It’s really concerning to me,” Kieran Quinn, a Toronto clinician-scientist studying long COVID, said of the report’s findings. “That just does not seem like an adequate number of supports.”
The CADTH report is not exhaustive, and does not include private clinics. But it offers a rough picture of the care that is available.
Dr. Quinn, who is an assistant professor in the University of Toronto’s department of medicine, said even though long COVID is a new condition, we have templates for how to tackle it. The health care system already looks after millions of Canadians who have other complex, long-term health problems, and it’s a matter of adapting to include a co-ordinated approach that is specific to the needs of those with long COVID, he said.
The condition affects multiple organ systems and involves a wide range of more than 200 symptoms, from fatigue and shortness of breath to muscle pain and depression, that persist for months after infection. Early reports of so-called “COVID long-haulers,” and the similarities of their experience to myalgic encephalomyelitis/chronic fatigue syndrome, emerged by the latter half of 2020. While researchers are still teasing out the causes, they have identified some potential risk factors, including being female, and having type 2 diabetes. It can affect all ages, including children.
The impact long COVID has on people’s lives can vary. For some, it can be a nuisance. For others, it can rob them of the ability to work and carry out daily tasks.
‘This has ruined my life and I’m running out of hope’: Canadians share their long COVID stories
A stepped-care model, which is used in mental health, will be important to provide care to more patients with the condition, Dr. Quinn said. In such a model, most patients could be supported through primary care, while more complex cases may require the involvement of specialists or multidisciplinary teams.
Dr. Quinn said his biggest worry is for the people with long COVID who fall through the cracks – those, including essential workers and residents of crowded homes, whose socioeconomic status put them at highest risk of getting seriously ill from COVID in the first place. Consider, for example, a single working mother struggling with long COVID, who lives in a lower socioeconomic neighbourhood where there is no easy access to health and other support, he said. “How is that person going to carry on?”
There is a potential for existing inequities to worsen or become entrenched, he said. “The knock-on socioeconomic effects of long COVID are the things that keep me awake at night.”
Underserved populations are less likely to have a family doctor, and may face multiple other potential barriers to getting help for long COVID, including language barriers and the distance they need to travel to get to specialized clinics, said Sonia Anand, professor of epidemiology and medicine at McMaster University.
Ensuring equitable access to long COVID care requires identifying who and where patients are. As a start, Dr. Anand said health care workers, or other similarly trained workers, could go out into the communities and try to determine the extent to which long COVID is underreported or underacknowledged in vulnerable populations.
Kayli Jamieson, 24, a Simon Fraser University postgraduate student who has been experiencing long COVID for the past 14 months, said one of her concerns is that some doctors don’t believe their patients have the condition, don’t understand it or don’t know what to do about it. She has friends and acquaintances who are not seeking help for long COVID symptoms because they don’t know what resources are available. One of them has neurological symptoms, but he found his physician to be condescending and unhelpful, she said.
Ms. Jamieson worries hurdles such as these may be a reason B.C.’s network of specialized long COVID clinics is seeing a decline in referrals, which it cited when it announced in February it would merge its four existing regional clinics into a single virtual clinic on April 1. The Post-COVID-19 Interdisciplinary Clinical Care Network reported a 90-per-cent decrease in referrals from 755 referrals in May, 2021, to 80 referrals a month in the last three months of 2022.
Ms. Jamieson said she is fortunate to have a helpful family doctor who referred her to the network, which provides strategies for how to cope with her condition, and has connected her with other patients for peer support, and with specialists who monitor her condition.
She wishes people understood that long COVID strikes unpredictably. She was previously a healthy and active young person who was fully vaccinated. But after a mild case of COVID in December, 2021, she now sometimes needs a cane to walk. Even going up the stairs in her home can send her heart racing to 150 beats per minute. She also experiences brain fog, dizziness, nausea, tinnitus and tremors.
Many people now believe COVID is no more harmful than the flu, she said. But this has not been her experience. “Even if it’s mild, it creates these symptoms.”
The lack of attention now given to the airborne nature of the virus, and the risks of COVID infections and reinfections, is something that troubles Andrew Longhurst, a health-policy researcher at Simon Fraser University – since, currently, the best way to prevent the condition is to avoid catching COVID in the first place. He said COVID reinfections are not counted, deaths and hospitalizations are poorly tracked, and there is a lack of policy focus on the long-term effects of COVID.
“There’s very little recognition that mitigating reinfection is important,” Mr. Longhurst said.
Even though most places have dropped infection-control measures, in her full report on long COVID, released on Thursday, Canada’s chief science adviser Mona Nemer noted the best way to prevent the condition is to avoid the virus, and continue indoor masking in public places and staying up-to-date with vaccinations. Vaccines appear to decrease the risk of long COVID, and emerging evidence suggests the antiviral treatment Paxlovid also lowers the risk of developing the condition, the report said. Still, with the pandemic and the virus still spreading, many more Canadians are likely to be affected by long COVID, Dr. Nemer wrote.
The release of her report coincided with a federal government announcement the same day that it would invest $20-million in a national research network called Long COVID Net, and another $9-million to develop clinical guidelines on the condition.
The problem of long COVID, and of providing accessible care across the country to those who have it, may seem overwhelming, said Adam Brown, director of Toronto’s Cornerstone Physiotherapy, who is working with the University Health Network to study the condition. But the pandemic has proved huge and difficult problems can be solved when there is a sense of urgency, he said – it just takes political will and capital.
“If you go back to 2020, I think that sometimes we forget that the world really turned on a dime,” Mr. Brown said. “Things that were seemingly impossible to do were done in a very short period of time.”