Upcoming changes to B.C.’s Medical Services Plan could affect how thousands of long-COVID patients access care.
Starting Sept. 1, MSP is capping all online group medical visits to just 20 patients, to “ensure there can still be a one-on-one interaction between each patient and the attending physician,” the Health Ministry told The Tyee.
Most long-COVID care in B.C. is currently delivered through large online group telehealth sessions from the Bowen Island-based BC Centre for Long COVID, ME/CFS, and Fibromyalgia, or BC-CLMF, which currently has over 5,200 patients — with 25 more referred every day, Dr. Ric Arseneau told The Tyee.
Arseneau is a specialist in internal medicine and runs the clinic with Dr. R. Jane McKay, also a specialist in internal medicine.
The majority of patients are women who live in or close to poverty, and who live outside of urban centres. One-quarter of them are house- or bed-bound, Arseneau said.
Telehealth, Arseneau added, allows doctors to reach patients who aren’t able to travel for care.
“Our clinic shows we can help [long-COVID] patients feel better, cope better, return to work and get into remission,” he told The Tyee.
The clinic hosts daily virtual sessions on subjects such as medications for treating the symptoms of long COVID, exercising with chronic conditions and how to deal with the grief that comes with chronic illness, with as many as 50 patients on each call.
How can a doctor attend to that many patients at once? Quite well, actually: group sessions about medications allow for a wider scope of questions to be answered, cover the cost of bringing in allied health professionals such as physiotherapists and can be broken down into groups of 10 to answer questions. The clinic also offers an in-depth one-on-one meeting with the doctors running the clinic during intake, and patients can request further one-on-one meetings and will be seen within a week or so.
The clinic doesn’t replace primary care providers and is more educational and treatment focused, Arseneau said.
Arseneau said it’s important to distinguish between post-COVID-19 condition, which is straightforward to diagnose and has many doctors offering excellent care in B.C., and long COVID, which is harder to diagnose and has limited doctors offering care.
Post-COVID-19 condition generally covers four categories.
First, there are the people who get tissue damage, like lung scarring or blood clots. Second, there are people whose illness triggers an autoimmune disease, such as rheumatoid arthritis, lupus or Sjögren’s syndrome. The third group are people whose illness triggers a metabolic disorder, such as diabetes, hypertension or high cholesterol. The fourth group consists of people whose illness triggers psychiatric conditions such as depression, anxiety or post-traumatic stress disorder.
Then there’s the fifth category, where patients suffer from post-viral syndrome, colloquially known as long COVID.
The BC-CLMF clinic serves patients suffering from post-viral syndrome, which doesn’t have a formal definition, Arseneau said.
It can occur in roughly 10 per cent of patients after any viral infection and can show up as patients develop conditions like myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia or postural orthostatic tachycardia syndrome, which do have clinically diagnosable criteria, he said.
These are diseases that can occur after the body goes through extreme stress, like a car accident or childbirth, but his clinic looks at the post-viral version of these conditions.
When patients are referred to the clinic, they get a one-on-one consultation with a doctor and then are given full access to everything offered by the clinic.
The BC-CLMF offers online group medical visits about medication, treatment and prescriptions; to learn what other patients are struggling with and what worked for them; and to listen to lectures by allied health professionals such as physiotherapists, occupational therapists, naturopaths, dietitians, counsellors and psychologists.
Arseneau said he’s open to trying new treatments, such as off-label prescriptions, if the treatment is low-cost, low-risk and backed by some form of evidence, even if it’s anecdotal.
It’s important for health care to be grounded in evidence-based medicine, which ideally emerges from randomized control trials, but long COVID doesn’t get a lot of attention, which means there’s not a lot of money for research to generate that evidence, he said.
Arseneau said this multidisciplinary program is funded by MSP fees and has been “hugely successful” in reducing emergency room visits, specialist referrals and hospitalizations for patients.
The secret is offering effective care, which also lowers health-care costs, he said.
Most of his patients are referred to at least two specialists before being referred to the BC-CLMF clinic, with one patient being sent to see a record 27 specialists. They’ll also be sent for a lot of labs and tests with little to show for it, because post-viral syndrome, or long COVID, doesn’t show up on labs, he said.
But long COVID can still be diagnosed by looking at a patient’s fatigue, pain, sleep disturbance, brain fog and unexplained symptoms, which can range from issues with their gut to their nervous system, Arseneau said. Patients might suffer for a couple of months or much longer, where they develop other diseases like myalgic encephalomyelitis/chronic fatigue syndrome.
When patients are referred to the BC-CLMF clinic, they’re connected with a doctor who understands long COVID and knows how to treat its symptoms, and are connected with a community of people who are similarly suffering and can assure them they’re not alone.
Arseneau said switching to in-person care would require 100 doctors and hundreds of allied health professionals, who would also need to be able to offer home-based care.
That’s not feasible, Arseneau said, because there aren’t 100 doctors offering this care in B.C. Instead, there are barely enough to count on one hand.
In B.C. there is the Post-COVID-19 Interdisciplinary Clinical Care Network, which operates the provincewide virtual Post-COVID Recovery Clinic through St. Paul’s Hospital, and long-COVID clinics at Vancouver General Hospital and the Jim Pattison Outpatient Care and Surgery Centre in Surrey.
But these programs can see a limited number of patients, have lengthy waiting lists and can care for patients for only a set period of time, Arseneau said. When patients graduate from these programs they’re often referred to his clinic, he added.
“For most of our patients it’s not a question of virtual care versus another form of care that is better,” he said. “It’s virtual care versus no care at all.”
The Tyee reached out to Vancouver Coastal Health Authority and Providence Health Authority to ask to speak with doctors offering long-COVID care at their clinics. VCH declined an interview and Providence referred The Tyee to McKay, who helps run the BC-CLMF clinic.
How one infection changed their lives
Vancouverite Riel Hahn is a standup comic who has toured North America and jumps at the opportunity for adventure. She has entertained audiences since she was four years old with acting, playing music and storytelling.
A COVID infection in the summer of 2022 knocked her down. And then she couldn’t get back up.
Hahn said her life transformed and she struggled with her new reality of being housebound, where she barely had the energy to make herself food and see a friend socially in the same 24 hours.
It’s a terrifying and isolating experience, Hahn told The Tyee. And it isn’t made better by doctors shrugging their shoulders and saying they don’t know how to help.
“Long COVID is still new and people are really struggling with not knowing what’s happening to them. It’s really scary,” Hahn said.
Vancouverite Alannah Berson, who uses she/they pronouns, got sick in March 2020. She’d just entered a master’s program and found, one month after recovering, that her energy was still shot.
“At the time the advice was to exercise all the time and ‘push through’ the fatigue,” they said. “Now I get so tired I can’t get up the stairs to go to bed at night. I haven’t been able to go to a grocery store for 5 1/2 years.”
It took Berson eight months of arguing with their family doctor to get them “to believe I’m not just tired.”
“You’re left with all of these debilitating conditions and no one believes you except [Arseneau],” Berson said.
Both Hahn and Berson are patients at the BC-CLMF clinic.
Understanding post-viral syndrome
Arseneau said he’s spent the last 30 years studying post-viral syndrome.
Mono, which can affect young people for six months to a year, is a mild post-viral syndrome, he said. More severe cases can result in chronic fatigue syndrome, postural orthostatic tachycardia syndrome, mast cell activation syndrome “and a whole bunch of other things.”
A major problem with diagnosing post-viral syndrome is that people suffering from it will have normal lab tests and CT scans, he said.
“Most patients get an incorrect psychiatric diagnosis before they get a correct medical diagnosis,” Arseneau told The Tyee.
As COVID swept across the world, Arseneau said he knew roughly 10 per cent of the infected would develop some kind of post-viral syndrome. He hoped that this might help raise awareness for the syndrome.
That didn’t happen, Arseneau said. But it did create a large population of patients in need of complex care, which family doctors aren’t well equipped to deal with, he said.
Thanks to vaccines and the evolution of the COVID-19 virus, today it’s closer to seven per cent of people who are getting long COVID after an infection, he said.
The Complex Chronic Diseases Program
A little over a decade ago Arseneau helped set up the Complex Chronic Diseases Program at BC Women’s Hospital, which, according to Arseneau, is the first program in Canada to deal with chronic fatigue and fibromyalgia.
The program could see only around 600 patients a year and quickly developed a waiting list of over 3,000 patients, he said.
Arseneau said he and McKay worked there together. They proposed increasing the number of patients the clinic could see by offering patients full access as soon as they’re referred to the clinic, and by creating group visits or a YouTube channel for patients.
When these ideas were turned down, Arseneau and McKay left and formed the BC-CLMF clinic, which offered group sessions, accessible upon referral, and didn’t have a time limit, so patients could stay as long as they wanted. He said the Complex Chronic Diseases Program graduated patients after one year.
“We’ve had to figure out how to provide good care to a large number of patients in a sustainable manner,” Arseneau said. “Luckily, we have group medical visits, which became possible during the pandemic, so we’ve leveraged those to not only see more patients but to offer more services to those patients.”
Arseneau said his clinic has been asking the Ministry of Health for a meeting. He’d like to discuss not capping group online visits or, if that’s not possible, capping them at 50 people instead of 20.
So far, he said, Deputy Minister of Health Cynthia Johansen has told him the government is aware of the issue but cannot meet at this time.
If nothing changes, the clinic will remain open, Arseneau said, but will have to cut lectures from allied health professionals. That means patients won’t learn how to adapt to and move forward with their new lives.
That prospect frightens Hahn. She said her path to recovery depended on learning about mindfulness and acceptance from those allied health professionals.
Hahn said mindfulness has helped her better respond to and navigate some of the scarier aspects of her disease. When she has an attack of “air hunger,” for example — meaning she can’t get enough oxygen into her lungs — or she suddenly can’t move her limbs, she knows to take note of her symptoms and work on relaxing instead of calling 911.
In the past, trips to the hospital have just resulted in tests that don’t find anything. Her mindfulness practice instead helps her ride out the symptoms without adding a panic attack or depression, she said.
Arseneau said a 20-person cap will shift the burden of care onto already overworked family doctors. It will additionally hurt patients who don’t have family doctors, he said.
Less efficient health care will also increase overall costs as patients with post-viral syndrome are sent to specialists and for tests that can’t help them, he added.
His patients are also organizing, forming LifeLineBC to advocate for the province to not cap the number of patients allowed in a single virtual group session.
For Berson, this fight is about disability justice.
It’s a similar fight as the one waged by advocates in the ’80s and ’90s when AIDS swept through queer communities and people were essentially “blamed” for their illness, they said.
Today, long COVID disproportionately affects people of colour, women, non-binary people who present in a feminine way, and people who are more likely to be responsible for unpaid home care, more likely to work frontline jobs and more likely to be paid less and therefore less able to take sick time to rest and recover.
And then they’re blamed for not recovering from COVID, Berson said.
To create change we need to stop blaming people for disabilities and instead support marginalized and low-income communities who are being disproportionately affected, she said.
