The head of the Canadian Medical Association is urging the federal government to boost access to family doctors for COVID-19 ‘long-haulers’ enduring ongoing illness and requiring referrals to multiple specialists.
Dr. Ann Collins said people struggling with persistent and wide-ranging symptoms and without a primary care provider need a regular physician to manage their care, which will continue long after the pandemic is over.
“There’s no question that there is clear value to having a primary care physician or a primary care team who the patient can always be anchored to, and who can make the necessary referrals,” Collins said from Fredericton, where she has been a family doctor for three decades.
At least 10 per cent of COVID-19 patients are believed to suffer from symptoms months after their diagnosis, according to various studies around the world that have cited brain fog, anxiety and conditions involving multiple organs, such as the heart and lungs.
Collins said there’s a lack of recognition about “long COVID” among health-care providers, likely because some have symptoms similar to chronic fatigue syndrome, leading to further frustration for patients who are stuck in a seemingly never-ending battle with the disease.
“What strikes me is that when we talk about COVID, we talk about numbers and we talk about restrictions and we talk about deaths. And now we’re talking about vaccines. We don’t spend a lot of time talking about the people that are sick.”
Shane Kinniburgh of Woodstock, Ont., said he felt some relief that he didn’t have any symptoms after testing positive for COVID-19 last October. But that feeling lasted for only a couple of days before he, his three-year-old daughter and his fiancee were hit hard by the infection.
Four months later, all of them are still struggling through a set of different symptoms but they don’t have a family doctor to track what’s happening to them.
“It’s been a lot harder,” Kinniburgh said. “When I try to make an appointment at a drop-in clinic I have to make sure they can do phone calls or video because by the government’s regulations, I can’t go anywhere. I can’t go into a business because I have symptoms.”
Kinniburgh, 40, said his symptoms are the worst among his family members and include a blockage in his heart, hives, food allergies and an intense sensitivity to sunlight that his eyes can’t tolerate.
When he ended up in the emergency department with a racing heart, Kinniburgh was referred to a cardiologist. When he started having migraines, he went back to a neurologist he’d seen after a concussion two years earlier.
Brain fog is most troubling for him.
“You feel like you’re 90 years old with dementia. I could literally go into one room if I’m in the confusion stage and not who know who I am, where I am. And then I’m just about in tears, in a panic, trying to figure it out. And I’m a 6 foot, four guy, 300 pounds. And I’m feeling scared when those things come on.”
Kinniburgh has undergone at least four tests to monitor his heart, countless trips to labs for blood work and dangerous spikes in his cholesterol and blood pressure. He can barely get out of bed sometimes and worries about caring for his young daughter and fiancee as they struggle with symptoms including anxiety, he said.
The lack of a family doctor means having to deal with whichever physician is available at a walk-in clinic, but no health-care provider is monitoring his overall condition or has a history of his pre-COVID health status, he said.
“It’s a pain. It literally is a pain because these doctors don’t know me.”
Specialized clinics for long-haulers have opened in parts of Western and Central Canada, with some conducting studies to better understand the condition, but patients are typically not seen until three months after their symptoms begin.
The Canadian Medical Association’s pre-budget submission to the federal government in February 2020 included a request for an expansion of primary care, especially for disadvantaged, rural and aging populations with chronic conditions, but Collins said long COVID-19 has greatly amplified the need to speed up initiatives.
The association asked for a $1.2 billion funding commitment over four years to establish primary care networks across the country based on successful programs in Ontario, Quebec and Alberta.
A federal budget was not tabled early last year due to the then-emerging threat of COVID-19, as lockdowns began around the country and the government cited economic uncertainty. A date has not yet been set to unveil the 2021 budget.
Health Canada did not provide information on any increase in funding specifically to expand family practice initiatives related to the pandemic but referenced a September 2020 funding agreement with the provinces and territories aimed at restarting their economies.
It includes a $700-million promise to support measures such as testing and contact tracing in response to a potential future surge in COVID-19 cases.
Statistics Canada data released last October shows 14.5 per cent of Canadians aged 12 and older, roughly 4.6 million people, did not have a regular health-care provider in 2019.
Residents of Quebec were the worst off, with 21.5 per cent of them lacking a family doctor, while nearly 18 per cent of British Columbians did not have a general practitioner and 17 per cent of residents in Saskatchewan were in that situation, the agency said.
In New Brunswick, about 10 per cent of people did not have a regular doctor while Ontario had the lowest number of residents, at 9.4 per cent, who were without a general practitioner. All other provinces had a rate that was similar to the national average, the data show.
Dr. Theresa Tam, Canada’s chief medical health officer, told a news conference last month that the provision of health care is within provincial and territorial jurisdictions and that the Canadian Institute for Health Research is supporting the further understanding of the long-term impact of COVID-19.
However, she said it’s important for clinicians to recognize there’s a lot that is unknown about people who have been infected with the virus and that “we need to continue to look after and support those who’ve had COVID-19.”