Scientists, experts and advocates are urging federal agencies to create an action plan to address Long COVID – Halifax Examiner

A group of scientists, experts and advocates are calling for “urgent” action to help the estimated 1.4 million Canadians living with “debilitating” symptoms that last long after their COVID-19 infection.

In a media release Thursday, members of the group said they wanted the federal government to take the lead in developing and funding a “just, national plan of action” to combat Long COVID. The term describes the range of new, recurrent, or persistent symptoms following COVID infection that are 12 weeks or longer after an initial—or suspected—COVID-19 diagnosis.

Those dealing with persistent symptoms are often referred to as long-distance drivers.

“Canada has been so lax about its approach to even acknowledging Long COVID as a problem,” Susie Goulding, founder of the 17,600-strong COVID Long-Haulers Support Group Canada, said in an interview Thursday.

“And now, two and a half years into this pandemic, we understand that this is a pretty big problem that needs to be addressed appropriately.”

Earlier this week, a study published by Statistics Canada and the Public Health Agency of Canada found that 1.4 million Canadian adults (4.6% of the population aged 18 and over) experienced symptoms at least three months after first or suspected COVID-19 infection had.

“We believe the number is actually much higher than that 1.4 million,” Goulding said.

The study aims to provide the first, nationally representative insight into Canadians with long-term symptoms.

Among the results of the study, a higher percentage of women (18%) reported persistent symptoms compared to 11.6% of men.

Of those whose symptoms lasted three months or more, 72% cited fatigue as the most unresolved symptom, followed by cough (39.3%), shortness of breath (38.5%), and brain fog (32.9%).

“People have suffered without support for far too long. Throughout this pandemic, we’ve been told that no Canadian should be left behind,” Goulding said.

“And long-distance drivers? We’ll be left with nothing for sure. No financial help, no mental support, nothing. Families suffer and children suffer.”

As a member of the call-to-action group, Goulding said she wants the federal government to commit to a national strategy that implements funding for research and medical interventions to help people.

She also believes that a public messaging campaign about Long COVID is needed as many long-distance drivers continue to face stigma and too many Canadians are unaware of what Long COVID might be like for themselves and their children.

As the number of people living with Long COVID increases, Goulding says the demand for help is growing. In the last few days, the number of newcomers to her national self-help group has doubled.

“So many new people are joining our group who had no idea Long COVID was even a problem, and this is two and a half years into the pandemic,” she said.

“It’s really disastrous that people don’t have an understanding of Long COVID at this time. Long COVID will not go away.”

Goulding stressed that funds are also urgently needed to set up long-COVID clinics across Canada.

“There is no continuity across the country. Each province is out there in its own right,” Goulding said. “We are only asking for a national plan so we don’t waste time so we can do this efficiently and urgently.”

Group members also call for a national strategy that is pan-Canadian and patient-centric and includes a long COVID definition, essential data collection, a national network of health practitioners, and a policy framework.

Research suggests that between 10% and 30% of those infected with the virus have Long COVID.

“There are a lot of Canadians who have been really unsupported up to this point,” Goulding said.

“I think the financial impact on Canadians is just devastating, and the burden of care is another aspect that people don’t think about.”

Nova Scotia Senator Dr. Stan Kutcher, a psychiatrist and professor emeritus at Dalhousie University, also lends his voice to the call to action.

“Canada must act strategically now to reduce the burden of Long COVID on our healthcare systems, our economy and the lives of those who are struggling,” Kutcher said in Thursday’s news release.

“We must conduct the research needed to better understand this disease and develop treatments that will ensure all Canadians have rapid access to quality care as soon as possible.”

Kutcher also spoke to the Halifax Examiner in June about his concerns and calls for investment in targeted long-COVID research. He pointed to the virus’ effects on organs, including the brain and cardiovascular system.

“If we just look at the brain, which is an area that I know a little better than some of the others, there’s potential for early dementia, potential for various neuropsychiatric disorders,” Kutcher said.

Although data specific to Canada is not yet available, the group pointed to US calculations showing the financial burden of a long COVID could be in the hundreds of billions of dollars each year.