A patient at one of B.C.'s few post-COVID-19 recovery clinics says he has been told the service is at risk of closure, potentially jeopardizing the health of hundreds of B.C. patients known as long-haulers.
Jonah McGarva, a Burnaby-based sound engineer and co-founder of the advocacy group Long COVID Canada, says he was finally accepted to the post-COVID recovery clinic at Abbotsford Regional Hospital in early December, 18 months after first trying to get in.
The Abbotsford clinic is one of four such clinics in the province, with two clinics in Vancouver Coastal Health and two in Fraser Health.
McGarva said the treatment and diagnoses received at the long COVID clinic have been "incredibly beneficial and helpful." Much is still unknown about the condition, which results in prolonged symptoms weeks or months after first being infected with COVID-19.
Days after McGarva began attending the clinic, however, he received word from staff that the clinic's future was uncertain — something corroborated by numerous patients in his Facebook group.
"The people like myself who've been waiting 18, 19, 20 months to finally get help of some kind, where are we going to go when this closes?" he asked.
"It adds to our stress and anxiety that we already face on a day-to-day basis because of our failing health."
McGarva was told that funding for the specialists who run the Abbotsford clinic would run out in March, with funding for the clinic itself guaranteed through September.
A spokesperson for Fraser Health refused to confirm if the clinic would close in March, but pointed to an evaluation of the post-COVID clinic program that ended in December.
"[The evaluation] assessed patient experiences, outcomes and operations. This evaluation is currently under review and we expect to be able to provide an update shortly," the spokesperson said.
The spokesperson did not answer a question about where patients would go if the Abbotsford clinic — the only such clinic in the Fraser Valley — closed. It served nearly 700 patients between January and October of last year.
McGarva said the potential closure of the clinic has been widely discussed in his group since early December, but Fraser Health has refused to be transparent with patients. The story was first reported in the Fraser Valley Current on Dec. 29.
Estimated number of long COVID patients in B.C.
McGarva says government institutions, policymakers, and researchers have been ignoring the scale of the problem with long COVID, which some estimates put at 30 per cent of all confirmed cases.
The numbers mean that of B.C.'s total cases so far, more than 83,000 long-haulers would need support and care going forward.
"I can't support a government any further that is going to continue to downplay something as drastic as a global disability," McGarva said.
"If you're talking about COVID and you failed to mention long COVID in the same conversation, you're not telling the full story."
Expert says province not properly reckoning with long COVID
Andrew Longhurst, a health policy researcher at Simon Fraser University, says B.C. is not being honest about the looming health crisis presented by long COVID.
"I feel like it's this whole piece of the pandemic that no one wants to talk about in B.C.," he said.
Longhurst says he is particularly concerned with the long COVID cases that will emerge after the province's ongoing fifth wave.
Currently in the province, those who want to access long COVID care have to provide either a positive polymerase chain reaction (PCR) test or a positive serology report, the latter of which can only be accessed through private medical labs.
That means most people testing positive for COVID-19 are doing so using rapid tests, which are not accepted as proof in the province's post-COVID clinics.
Longhurst says the province should have built up testing capacity so that people with long COVID do not fall through the cracks trying to seek medical aid.
He says Provincial Health Officer Dr. Bonnie Henry should have assured everyone with a positive rapid test that they would eventually get a PCR test or a serology test.
"The last thing that we want is people feeling helpless and that they're not being listened to because they can't prove [their long COVID symptoms]," he said.
"A lot of people that are long-haulers are not taken seriously. To say, 'Well, we're not even going to provide you with a confirmatory diagnostic test' … to me, it's deeply concerning."
In light of the testing limits, the province has said they would be reviewing eligibility requirements for long COVID clinics "to ensure continued equitable access." However, no announcements have been made on the subject.