One year after the start of the pandemic, people with COVID-19 over long distances still struggle to seek treatment
Kim Clark raises her hand and apologizes as she stops to catch her breath as she speaks through the “extreme pain” in her chest.
“It’s a typical day,” she says. “My head hurts, my chest hurts.”
Clark, 42, has been trying to find relief from his debilitating symptoms of post-acute COVID-19 syndrome – also known as “long COVID” – for almost a year. People with long-haul COVID often refer to themselves as “COVID long-haul”.
For Clark, the COVID-19 infection that started it all last April was mild compared to the damage that followed.
“I just had a stuffy nose, a cough, a little shortness of breath, but nothing intense like that,” said the former social worker, who lives in Mississauga, Ont.
Researchers estimated that about 10% of people who contract COVID-19 develop long-term symptoms – some believe the number could reach 30% – but they still don’t understand why.
As provincial and federal governments focus on urgent pandemic priorities – from prevention and vaccination to caring for critically ill patients in hospitals – people with debilitating symptoms as a result of their infection COVID-19 are being left behind when it comes to planning and spending, some experts say.
For example, Ontario’s recent 2021 budget has allocated millions of dollars for COVID-19, but long-haul COVID patients were not specifically mentioned.
Some say without more dedicated resources, many long-haul COVID-19 patients will have to navigate the healthcare system on their own, seeking care for a range of symptoms – from extreme fatigue to neurological disorders.
Having a dedicated group of healthcare providers, from internal medicine specialists to occupational therapists, who see large numbers of patients with long-haul COVID rather than the existing fragmented system of many specialists occasionally seeing long-haul COVIDs is the way to go. more effective at developing expertise when so little is known, said Angela Cheung, senior clinician scientist at University Health Network in Toronto.
Indeed, the more patients they see, the more they will begin to discover models and will be able to share these new discoveries.
“I think we need some sort of coordinated approach to this across Ontario and [even] better if it can be across the country, ”said Cheung, who is also the co-principal investigator of the Canadian COVID-19 Prospective Cohort Study (CANCOV), which looks at one-year outcomes in patients with COVID -19.
Care beyond necessary acute and preventive care
Today, even those who have a family doctor are sometimes alone. Clark said three potential family doctors fired her because they said they didn’t know enough about the long COVID.
“I think one of the things the health care system in general – even before COVID – was not good at dealing with after the acute component of their illness,” said Dr. Seema Marwaha, specialist in General Internal Medicine at Unity. Health in Toronto and editor of the Healthy Debate online forum.
“We must create a space for care that is not only acute and not just preventive in public health. We have to understand that there is this proportion of recovering people who will need help.
In an email response to CBC News, the Ontario Ministry of Health said hospitals could choose to fund clinics for long-haul COVID-19 “out of their global budgets.”
The ministry said it was aware of long-distance hospital-based COVID programs at the University Health Network and Michael Garron Hospital in Toronto, London Health Sciences Center, Windsor Regional Hospital and the Niagara Health System .
Similar programs exist in British Columbia and Quebec, and a handful of private sector companies also provide services, including Lifemark Canada, a chain of physiotherapy and rehabilitation clinics.
But if people don’t have insurance coverage, they have to pay out of pocket – something many of those who can’t work because of their symptoms, like Clark, can’t afford.
Canada has fallen behind some other countries in setting up government-funded long-distance specialist COVID clinics. For example, in December, the United Kingdom announced that it had invested 10 million pounds – or 17.3 million Canadian dollars – to open more than 60 specialized clinics across the country.
Diagnostic tests offer little clue
When Sonja Mally, 35, fell ill with COVID-19 in March 2020, she didn’t even realize it at first.
“All of these scary things happened some time after the initial infection,” said Mally, a tattoo artist from Toronto.
Before COVID-19, Mally was physically active. Now the woman who did 10-hour hikes spent months painstakingly rehabilitating herself so she could walk two kilometers, with days off in between.
Mally said she suffered from a series of “terrifying” symptoms, ranging from heartbeat to exhaustion so intense that they kept her in bed for five months. But the neurological problems were among the most worrying.
During a neurological test a few months ago, the artist was confident when testers said they were going to ask her to draw.
“I thought, ‘Oh, well, that’s my element,’” Mally said. “They asked me to draw a clock. And I couldn’t remember how to draw a basic clock. I couldn’t remember where the numbers went on a clock. I couldn’t remember which numbers went on a clock.
“It was mind-blowing.”
Clark and Mally have spent most of the past year moving from specialist to specialist – including cardiologists, neurologists and rheumatologists – trying to get help for their various post-COVID symptoms.
They had a lot of diagnostic tests, but the results didn’t show anything abnormal. The two were told they had anxiety.
WATCH | People with long-term COVID frustrated by the lack of care options:
“ A difficult constellation of symptoms ”
“Long-term COVID is a difficult constellation of symptoms,” said Dr. Nadia Alam, a family physician in Georgetown, Ont., And past president of the Ontario Medical Association.
“When patients come to me with symptoms of fatigue, decreased endurance, decreased exercise tolerance … vague symptoms that are found in so many diseases, if I don’t know. not that the patient had COVID-19, a long COVID not even be on my list of possibilities.
“Having seen COVID in some of my patients for a long time, it’s often not even on their list of possibilities – they think something else is going on.”
That’s why it’s critical not only to have specialists who study COVID for a long time, but also to make sure they’re on the doctor’s radar, Alam said.
“We need to advertise the services offered and the eligibility of patients who should be seen there more broadly,” she said. “I am a physician with a large network and find it difficult to understand where to find resources.”
The study hopes to recruit 2,000 patients
Much of the information Clark and Mally were able to gather came from the COVID Canada Long Haul Support Group, launched on Facebook last June by Susie Goulding. The group has over 12,000 members.
The group provided support they were unable to find from health care providers, they said.
This does not surprise Marwaha, who also studies patients’ experiences with the healthcare system.
“We don’t know how to help these people,” she said. “And sometimes when we don’t know how to help them, they’re bounced around a lot. Sometimes they feel like their symptoms are all in their own head.
Clark and Mally say they hope they’ve found a place that can finally help them. The two have applied to be part of the CANCOV study that Cheung is co-leading.
There are around 900 participants so far, Cheung says. The goal is to recruit 2,000 long-haul COVID patients from across Canada and provide different types of treatment and rehabilitation in health care centers in Ontario, Quebec, British Columbia, Alberta, Saskatchewan and Manitoba while collecting data to find out what works to help sufferers get their lives back.
Because there are more Canadians with long-term COVIDs than the study can accommodate, Cheung is also pushing for government funding to create more specialized clinics like the ones in the UK.
Establishing this level of care for long-haul COVID patients requires money and resources at the federal and provincial levels, said Cheung and Marwaha, and public recognition that long-haul COVID is a serious problem.
“It won’t go away when the pandemic sets in. So we better start thinking about it now,” Cheung said.
PHAC oversees research, says federal minister
In an email response to CBC News, a spokeswoman for Federal Health Minister Patty Hajdu said there is currently not enough data to determine the frequency of the long-term effects of COVID- 19 on health.
“The Public Health Agency of Canada is monitoring the latest research in this area,” the release said.
“While the provinces and territories are responsible for the management and delivery of health care services, including potential rehabilitation and treatment services for people with long-distance COVID, our government is working with them to be there for Canadians.
The federal Department of Health is also funding studies through the Canadian Institutes of Health Research, the release said, including the CANCOV study.