Advocates, scientists, patients and others are warning of a coming tsunami of people with disabilities as a result of long COVID. And there are growing fears that the health system is not prepared.
“It is predicted that long-term COVID will lead to a substantive and sustained impact on our health system,” Senator Stan Kutcher told a long COVID awareness conference this week. “And let’s remember this is a system that can be currently characterized as running on empty.”
Kutcher, a psychiatrist specializing in adolescent mental health who serves as an independent senator, has focused on issues such as vaccine disinformation since being appointed to the Senate. He is calling for changes — including a focus on health system readiness and better disability support — to help people suffering from long COVID.
“Can we expect this broken system to now rally effectively to address the needs of Canadians suffering with long COVID?” he asked.
“We have to start moving very quickly to make the changes in our health-care system to enhance capacity because long COVID will put additional strain on the system and the people who work in it,” he said.
He was speaking as part of a virtual town hall to mark National Long COVID Awareness Day in Canada. The event was organized by the group COVID-19 Resources Canada and featured researchers, physicians and patients.
Dr. Anne Bheréur, a Montreal family and palliative care physician, is both. Bheréur, who has long COVID after contracting the disease in the palliative care unit where she works, struggled to catch her breath during her talk.
Organizers said Canada has work to do to even define and understand the scope of long COVID in the country.
I am housebound and exhausted, my beloved career, which I worked so hard to build, is gone and I can’t work.
“Many countries at the World Health Organization have all created definitions. Canada has fallen behind and we are urging health authorities to provide us with a proper definition and appropriate response,” said Dr. Yanet Valdez Tejeira, an immunologist and COVID-19 lead in British Columbia. The lack of a standard definition is a barrier to studying and measuring the prevalence of the condition, she said.
The term long COVID refers to some 200 symptoms that can develop in people who have had COVID-19 including neurological, cardiac, respiratory and many others.
Ontario’s COVID-19 Science Advisory Table estimated earlier this year that between 57,000 and 78,000 people in the province have experienced Post-Acute COVID-19 Syndrome, another name for long COVID. That range is likely to have grown.
Public Health Ontario, in a review of research into long COVID that it released in April, has also warned of the need for the health system to be prepared.
“In order to plan for a potential increase in use of health-care resources post-COVID-19, the health care system needs to understand PACS (post-acute COVID syndrome) in recovering patients. Knowledge of the risk factors associated with the development of PACS may be able to assist with following individuals at risk of further morbidity and direct resources appropriately.”
The Public Health Ontario review found a prevalence of PACS ranging from about 51 per cent to 80 per cent of patients following COVID-19.
Participants in the awareness day panel discussion noted that long COVID occurs both in people who have had severe cases of COVID-19 and those who have had mild or no symptoms. The audience heard from patients whose lives have virtually been shut down by long COVID.
“I am housebound and exhausted, my beloved career, which I worked so hard to build, is gone and I can’t work. Long COVID has been truly devastating,” said panelist Carrie Anna McGinn, a Quebec City woman.
“There is a tsunami of disability coming to Canada as a result of long COVID,” she predicted.
Yale professor and researcher Dr. Akiko Iwasaki, who has done research into long COVID, predicted a “chronic disabling event” in many of the people who fail to recover from COVID-19.
Kutcher, meanwhile, said Canada is lagging behind other countries when it comes to preparation for and research into the many facets of the illness.
The federal government committed $20 million to long COVID research in its most recent budget but Kutcher said that is nowhere near what is needed to better understand and treat it.
“There is a real urgency to get going on this basic science and getting prepared for long COVID.”