A doctor with expertise in long COVID is concerned that patients whose symptoms continue months after the infection clears have been “left as orphans” in B.C.
Dr. Ric Arseneau, a specialist in internal medicine, said there are “very few” B.C. physicians he knows of who are taking on the long COVID patient population, now that the province’s Post-COVID Recovery Clinics have closed their physical doors.
“The estimate is pretty consistent across all the studies that about 10 per cent of individuals who get COVID will go on to develop post-viral syndrome,” Arseneau told Global News.
“In the majority of patients that I see, it’s lifelong. About three quarters of the patients that I see are unable to work.”
On April 1, B.C. consolidated its five post-COVID clinics into a virtual service, citing a reduction in monthly long COVID referrals, from a high of about 755 in 2021 to 80 per month by the end of last year.
In a Friday interview, Health Minister Adrian Dix estimated there were between 4,000 and 5,000 long COVID patients who were part of the clinic program, and remain part of the program, now online. The intention wasn’t to “reduce care,” he added, but to ensure the services had a new, permanent format.
“It was just a very practical decision based on the change in new referrals of long COVID,” Dix said. “That’s adapting to the conditions of COVID-19.”
Long COVID includes a range of symptoms that last months or years after the initial COVID-19 infection, including breathlessness, cognitive challenges, hair loss, headaches, post-exertional malaise, taste and smell changes, and more.
Vancouver’s Katy McLean has dealt with long COVID since fall of 2020, and said brain fog, dizzy spells and debilitating fatigue have effectively taken away her independence. Diagnosed with a variety of new and chronic complications, she said she now has groceries delivered and is unable to leave the house more than once or twice a week.
“I’m still not able to work, I’m still not able to exercise or play sports, or really socialize very much,” McLean told Global News on Friday.
“I cannot walk more than a couple hundred metres and I use mobility aids now.”
McLean had attended the Post-COVID Recovery Clinic at St. Paul’s Hospital and described it as a “lifeline.”
“I had access to specialists that were able to do comprehensive testing to look for organ damage, tissue damage, secondary problems, and were also able to advise my GP for anything that wasn’t and still isn’t common knowledge,” she explained.
“I had access to physiotherapy that was specialized, occupational therapy, and social work to help with disability.”
She said the physical clinic shutdown feels like “a dismissal” and has exacerbated her general feelings of having been “left behind by society and the government throughout this entire pandemic.”
According to the Provincial Health Services Authority (PHSA), patients without a regular primary care provider will continue to have COVID-19 care facilitated by the virtual recovery clinic. An online information sheet states that no one will be discharged until the clinic determines it is safe to do so.
Nurses, physical therapists, occupational therapists and social workers will continue to support patients, and appointments, education sessions, group therapy and other tools will be provided as needed.
“We want to make sure the people have the support and care they need,” said Dix.
“I’m also concerned with other impacts of COVID-19, including the impacts of all of what’s happened over the last number of years on people’s mental health, on people’s physical health, on their testing for serious illness, and long COVID, which is effectively a new chronic disease for the system to manage.”
British Columbia was the first province to establish a network dedicated to long COVID research, education and care, called the Post-COVID-19 Interdisciplinary Clinical Care Network. Its funding is permanent and its work is ongoing, even though the dedicated physical clinics have closed.
McLean said she’s in several long COVID support groups, and even when the clinics were open, the general consensus among her patient peers was that nobody “is feeling particularly supported or like they have the resources they need medically or socially.”
In an attempt to support long COVID and other chronic disease patients, Arseneau said he helped set up a new complex, chronic diseases clinic at the B.C. Women’s Hospital. That program now has 3,000 people on its waitlist.
“I just opened up my practice to this patient population in the last year, and now I’m booking consults into November so there is very little care available to this patient population,” he said.
A short-term measure the B.C. government could take to support long COVID patients is to qualify them for Paxlovid, a course of antiviral pills that are only available to select medically vulnerable, elderly, Indigenous, unvaccinated or un-boosted patients, he added.
“If you already have long COVID and your function is decreased by 50 per cent and you get COVID again, it may be decreased by another 50 per cent to 25 per cent and that may be lifelong,” he said.
“So preventing and treating infection early in this patient population, including the chronic fatigue and fibromyalgia population, is extremely important.”
Long COVID doesn’t always include tissue scarring, he added, and while many kinds of tests may churn out normal results among long COVID patients, that doesn’t mean nothing is wrong with them.
“This is real,” he said. “We need to have an organized approach to taking care of these patients. The haphazard, wherever you happen to fall is just not going to cut it. The idea of closing these long COVIFD clinics — it’s like I tell my patients, we may be over COVID but COVID is not over us.”