Ava Sochor had spent years researching medications and specialists who could help treat her son’s myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). By the time Evan was accepted into treatment at a specialized clinic in BC, Sochor said she had almost given up hope.
Now, after a year of virtual appointments with physicians and specialists through the BC Centre for Long Covid, ME/CFS and Fibromyalgia (BC-CLMF), Sochor said he’s improved dramatically.
The debilitating chronic migraines that used to plague Evan throughout the week have been cut in half. Where he was once bed-bound 90% of the time, he now has days where he can be out of bed for half the day.
“I know he’s feeling well when he starts baking,” said Sochor. “The last few weeks he’s started cooking again, he’s a really good cook.”
But this week’s changes to the province’s Medical Services Plan (MSP) fee schedule threaten the model of care that patients like Evan have found so helpful.
Starting November 1, the number of patients who can attend virtual group appointments is limited to 30 participants, and the per-patient fee paid out to service providers for virtual groups has gone down from $14.71 to $11.42.
Fees and participant limits for in-person group appointments have not changed.
The BC-CLMF’s virtual group sessions typically have up to 50 patients and feature allied health professionals — including psychologists, physiotherapists, dietitians, and occupational therapists — who help patients deal with the wide variety of symptoms associated with complex chronic illnesses.
Patients can participate in group sessions as soon as they have received a referral to the clinic, but can only get prescriptions and paperwork completed by the clinic after a one-on-one consultation.
Dr. Lana Dyment, a physician with the BC-CLMF who focuses on pediatric patients, said changes to the MSP fee schedule mean the BC-CLMF can no longer afford to offer virtual group sessions with allied experts, meaning she’s losing “a huge piece of support for her pediatric population.”
A study of the effectiveness of the clinic’s virtual care model, undertaken by consulting firm MNP and commissioned by the clinic, found that for every $1 invested in the virtual group medical visit model through MSP billings, about $6.85 in social and economic value is generated for patients, caregivers and the broader healthcare system in BC.
The study also surveyed BC-CLMF’s patients and found that 83% reported improvements in physical health, and 86% reported improvements in mental health.
“Financially, we save the government money. Scientifically, we’re serving a population who really, literally can’t get out of bed sometimes without causing post-exertional malaise,” said Dr. Dyment.
She said virtual care is essential for her patients not only because they’re located all over the province, but because the nature of their illnesses means that many are house-bound or bed-bound. Forcing those patients to attend in-person medical appointments could actually make their symptoms worse.
One of the most common side effects is post-exertional malaise (PEM), a delayed form of severe fatigue that can set in days after activity and leave patients bed-bound for days or even weeks.
“They would experience post-exertional malaise just from the travel,” said Dr. Dyment. “So they have to attend virtually for their own health and safety and benefit.”
If patients who experience PEM try to ‘push past’ their fatigue, their baseline activity envelope — the amount of activity they’re regularly capable of — can lower over time. Continuing to push could permanently lower their baseline.
Dr. Dyment said the fact that the changes only impact virtual care creates a double standard for patients with complex chronic illnesses.
“If you’re well, there’s no limitation to the benefit that you can receive. But if you’re not well, you’re being curtailed,” said Dyment.
A recent report from researchers at Simon Fraser University (SFU), based on a survey of 621 people with Long Covid, found that virtual healthcare delivery is “vital for patients with energy-limiting conditions.” The most common reason given for wanting virtual care was “reducing post-exertional malaise.”
Sochor said that despite her own medical background and her familiarity with many of the medications that are often prescribed ‘off-label’ (prescribing drugs for an unapproved use or dosage) for conditions like ME/CFS, finding doctors and specialists who would prescribe them for underage patients like Evan was very challenging.
She said that simply finding medical professionals who are knowledgeable about ME/CFS, and take the condition seriously, was difficult.
“He’s been brushed off by everyone,” said Sochor. “There’s a lot of stigma with these conditions, and people are made to feel unheard and like it’s psychiatric and not a [real] thing.”
A majority of the Long Covid patients surveyed by the SFU researchers who had access to a primary care provider perceived those providers as having “low to no awareness” of Long Covid, and reported that their primary care providers often gave inappropriate care advice or invalidated their symptoms.
BC-CLMF’s pediatric care program is unique in Canada. Dr. Dyment said that when she was developing the program, she had to look at clinics in the US and the UK, because aside from a handful of individual practitioners, there are no other clinics that offer pediatric Long Covid programs.
“Kids with Long Covid get really sick,” said Dr. Dyment. “They’re the ones who can’t get out of bed. They’re the ones who can’t go to school.”
Dr. Dyment said she fears that outdated ideas about complex chronic illnesses that tend to downplay the severity of symptoms and their biological origin could be driving the decision-making around limiting access to virtual care.
“There’s a lot of good evidence that our patients are very sick for very biological reasons,” said Dr. Dyment. “But the powers that be are not looking at the science.”
The decision to make these changes was made by the Medical Services Commission on September 24, two days before the provincial election was called. The commission is made up of three representatives from the government, three representatives from Doctors of BC, and three members of the public.
In a statement to PressProgress, Doctors of BC President Adam Thompson wrote that the organization “successfully advocated for increasing the cap on participants in Telehealth Group Medical Visits from 20 to 30 and for pushing back the implementation deadline to give doctors sufficient time to pursue alternative funding models.”
Thompson added that Doctors of BC “supports expanding access to virtual care where it can improve patient care and help address barriers to accessing health services.”
“We believe physicians should have the flexibility to determine when virtual care is appropriate based on their patients’ individual needs. Virtual care should complement in-person services, support continuity of care, and provide patients with more options for accessing timely, appropriate care.”
PressProgress reached out to the BC Conservatives to ask if the party has plans to reverse the changes once the legislature resumes later this month, but did not receive a response by the time of publication.
The post Pediatric patients with complex chronic illnesses impacted by BC’s quiet changes to virtual care appeared first on PressProgress.
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