N.L. government, health authority won't talk about treatment plan for long COVID patients

Despite warnings from Canada's chief science adviser that long COVID could be a "mass disabling event," it remains unclear whether Newfoundland and Labrador's government or health authority has any plans to address the condition.

What is clear is that it's affecting thousands of people in the province, says infectious diseases researcher Tara Moriarty.

She says it's likely that, so far, somewhere between 15,000 and 20,000 people in the province have developed COVID-19 symptoms since December 2021 that have lasted longer than three months.

"We're still looking at a really substantial number of people in Newfoundland and Labrador who probably developed long COVID in the last year or so," said Moriarty, who leads an organization called COVID-19 Resources Canada, which provides a weekly forecast about the risk of COVID-19 in different regions.

Other provinces, including Alberta, Quebec and Ontario, have implemented long COVID clinics, while Nova Scotia has implemented a long COVID self-management program, which includes virtual education and options for individual follow-up care for those suffering with ongoing symptoms.

In an emailed statement to CBC News, Newfoundland and Labrador's Department of Health said long COVID is managed at the "clinical level" by the newly amalgamated provincial health authority, known as Newfoundland and Labrador Health Services.

The health authority has refused to talk to CBC News about what, if any, treatment plans for long COVID it has. 

"While the department sets provincial priorities and strategic objectives for the health system in Newfoundland and Labrador, the provincial health authority now known as NLHS is directly responsible for the operational administration and delivery of health services," reads the Department of Health's statement.

The department also would not answer questions about whether there are any plans to create a long COVID clinic.

'Mass disabling event'

It's a situation that leaves some doctors in the province with questions. 

"We're very much learning as we go, with no real direction from any government organization within the province," said Dr. Mari-Lynne Sinnott, a family doctor based in St. John's.

Long COVID is a condition in which a cluster of symptoms persists after an initial infection of COVID-19. Since the condition is so new, says Sinnott, it can often be difficult to diagnose and treat.

Dr. Mona Nemer, Canada's chief science adviser, said in a report released in March that long COVID could be a "mass disabling event" in Canada, and could have future economic implications for the country, which may be "far-reaching and require planning and monitoring."

At a news conference last summer, Newfoundland and Labrador's chief medical officer of health, Dr. Janice Fitzgerald, said the province "will have to develop a way forward" and start looking at how to deal with the condition.

Sinnott said she hasn't received any information from the province about long COVID. 

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"Most of the information that we have around long COVID is the same information that's available to the general public from Health Canada and the government of Canada," she said. 

Within the last year, Sinnott said, she's seen an increased number of patients she believes may be suffering from long COVID.

Corner Brook teacher Stacey Alexander says she has been suffering from long COVID for more than two years and has experienced a variety of ongoing symptoms, including muscle tremors and nervous system dysfunction.

Alexander says the main response people like her receive when they ask government officials for information about long COVID is "talk to your general practitioner."

She said she wants the province to start educating people about long COVID and the risks of contracting COVID-19. Without public education, she said, people like her have to do their own research or self-diagnose.

"There has not been any communication regarding post-COVID condition or long COVID," said Alexander. 

Researcher wants more public info

Without a co-ordinated response from governments and health authorities, Moriarty, who is also an associate professor in the University of Toronto's faculty of medicine, said it's much easier for misinformation to creep in regarding what long COVID is and how to treat it.

She said Newfoundland and Labrador should generate public awareness about long COVID by creating publicly available web pages. She also wants the government to make a co-ordinated and regular effort to inform care providers like family doctors about the latest long COVID research.

Although there is no exact figure of how many people still have long COVID in N.L., Moriarty says setting up at least one long COVID clinic is warranted due to the number of people who are likely experiencing prolonged COVID-19 symptoms. 

Alexander said the only resource she could find in the province for those with long COVID is a tab on the public health website that directs people to the federal government's long COVID resource page.

What she wants is to be seen and heard.

"We're taking public health and we're putting it on the individual," she said. "We are supposed to be doing these things together."

"It's extremely isolating," she said.

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