COVID-19: People suffering from long-COVID fight uphill battle for acknowledgment and support

“I couldn’t say more than two words without gasping for air. I’ve had several mini heart attacks. Every night I felt like I was suffocating. I couldn’t read because my brain couldn’t grasp words.” — Adriana Patino

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Adriana Patino’s life has been “a living hell” since she first started showing symptoms of COVID-19 on Christmas Day 2020.

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“I couldn’t say more than two words without gasping for air. I’ve had several mini heart attacks. Every night I felt like I was suffocating. I couldn’t read because my brain couldn’t grasp words. My heart rate would shoot up to 175 beats per minute out of the blue for no reason. I couldn’t walk, I couldn’t do anything,” said the 36-year-old competitive swimmer from North Vancouver.

Those symptoms have not gone away. As a result, Patino has been unable to return to her job as a benefits consultant for an insurance firm.

“I still can’t always read, to this day. I still have a super heavy chest, breathlessness and extreme fatigue every day.”

Researchers say Patino is not alone. Preliminary findings from a national study estimate one third of Canadians who catch COVID-19 will end up with what the World Health Organization calls “post-COVID condition.”

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In B.C., that estimate, based on the number of reported cases, would translate to more than 81,000 people who may be experiencing a wide range of symptoms more than three months after first becoming sick. Although no longer contagious, long-haulers suffer from shortness of breath, brain fog, as well as kidney, heart, vascular and lung conditions that can be debilitating.

“I can’t carry grocery bags, I cannot carry any weight. I can only vacuum one room at a time in a day. Some days my arms are sore from just washing my hair,” explained Mandie, a 46 year-old Vancouver resident, who became infected near the beginning of the pandemic in March 2020.

“The intensity of fatigue and the onslaught of symptoms are on a regular basis and no one could tell me what was going on. I don’t recognize myself,” she said. “I do not know what happened to the person I was before. I cannot tell you how terrified and awful the last year was for me.”

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British Columbians like Mandie and Patino said the long-term effects from COVID-19 have been made worse by having to fight for help from the medical community, employers and even friends and family to manage a disease that is not well understood and for which there is no cure.

Mandie has asked that her last name not be made public over fears that she will never get a job if potential employers know she has long-COVID.

“I have heard terrible stories from other long-COVID people who are having difficulty with their employers,” she explained. “People who have worked for decades and are being denied their benefits. Some have hired lawyers to fight for them.”

Those stories are shared by long-haulers who support each other through a group called Long COVID Canada.

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The group was established in June 2020, months before the World Health Organization defined “long-COVID” and more than a year before long-COVID was acknowledged by Canada’s public health officer, Dr. Theresa Tam.

COVID-19 long hauler Jonah McGarva outside his Burnaby home. Photo: Jason Payne
COVID-19 long hauler Jonah McGarva outside his Burnaby home. Photo: Jason Payne Photo by Jason Payne /PNG

A co-founder of the group, 43-year-old Vancouverite Jonah McGarva, said he was forced to become an advocate at a time when some doctors and employers denied long-COVID existed and public health officials offered few answers about their illness.

“Canada was completely ignorant and oblivious to the long-COVID topic,” said McGarva, who contracted COVID in March 2020 and has not worked since. “Because our health system is in such disarray on the federal and provincial levels you have to advocate for your own health.”

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Long COVID Canada wrote to the national Council of Chief Medical Officers of Health in late June 2020. The seven-page letter begged officials to invest in research and to educate the medical community, including emergency room staff, who they said were dismissive to long-haulers seeking help.

“Without any medical answers or insight into our condition, we are left with living in limbo — unable to access treatment and therapies and filled with uncertainty about our futures,” it read.

McGarva said the response from B.C.’s provincial health officer and chair of the council, Dr. Bonnie Henry, came two months later. In it, she assured the group, “your suggestions and recommendations are being well considered.”

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“We’ve heard nothing since,” said McGarva. However, he said Long COVID Canada was tapped by the Canadian Institutes of Health Research to sit on a panel at a conference devoted to long-COVID one month after Long COVID Canada was formed. Six months later, B.C. set up its Post-COVID-19 Interdisciplinary Clinical Care Network, the first jurisdiction in Canada to create a program of care for long-haulers.

Its four clinics serve more than 2,200 patients in Vancouver, Surrey and Abbotsford. All have long wait lists.

The clinics’ multidisciplinary teams assess long-COVID patients through blood work, CT scans, MRIs and ultrasounds along with questionnaires that are used for research purposes and for referrals to specialists. Clinicians help patients create a plan of care and lead seminars to teach them ways to manage their symptoms.

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Dr. Zach Schwartz, the medical director of the clinic at Vancouver General Hospital said patients are followed for up to 18 months but it’s been tough not being able to offer them proven treatments or a known cure.

“There’s always a certain degree of uncertainty in medicine and that is difficult to deal with but this has taken it to a whole new level,” said Schwartz. “We have learned a lot but at the same time we haven’t.”

Mandie says the clinic’s seminars on managing fatigue, brain fog and panic attacks saved her life.

“The classes explain to us what these symptoms are and what is happening in your body and until you understand that, you are terrified,” said Mandie. “My relapses have gone from being these really deep valleys to rolling hills.”

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McGarva will soon be outfitted with a monitor to measure how, when and hopefully why his heart speeds up and slows down uncontrollably.

“I sat for two years and couldn’t do anything so my journey has just begun.”

It’s been a long journey for all three. It took more than a year before they became enrolled in their clinics. Neither McGarva nor Mandie had a positive PCR test, which was required. However, at the start of the pandemic, there was a shortage of PCR tests and most were reserved for health care workers.

“It took a lot of arm twisting from my personal doctor, who believed so strongly in my case that there was something wrong and I needed this clinic,” said McGarva.

The network that runs the clinics changed its policy last summer, to allow those who contracted COVID-19 between January and June 2020 to be eligible for services without a PCR test. It is currently reviewing its eligibility requirements because the number of cases caused by the Omicron variant means people are again unable to get a PCR test to confirm their disease.

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The clinic network also provides information online and through a clinical consulting service for family physicians so they can treat post-COVID-19 patients closer to home. But its clinic in Abbotsford is facing a new threat.

Mandie was emotional as she recounted being told by her Abbotsford clinicians that their funding runs out in March.

“Before the clinic, I had absolutely no hope. I felt suicidal many times,” she said through tears. “I was bedridden for three months and no one could tell me if I would get well. When you have a debility to this level, especially for people like me who were so healthy — who never got sick, and have no context for what an illness can actually do to you, this has been my lifeline.”

In a written statement, Fraser Health would not confirm whether the services, including physiotherapy, occupational therapy and mental health services with a social worker, would continue in Abbotsford after March 31.

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It said: “The evaluation of the post-COVID-19 clinics was completed at the end of December 2021. It assessed patient experiences, outcomes and operations. This evaluation is currently under review and we expect to be able to provide an update shortly.”

It’s unclear whether any budget cuts would affect national studies that are using data gathered at the clinics.

Dr. Angela Cheung is leading two research studies on long-COVID funded by the Canadian Institutes for Health Research.

One is a randomized trial looking at various treatments for long-COVID. The other is a longitudinal study of 2,000 long-haulers, including many from B.C., who caught the virus across the four pandemic waves.

“We are looking at the various variants, we’re looking at the genetics of the virus and genetics of the host. We’re looking at how people are coping with long-COVID — looking at various outcomes for the patients and their caregivers and trying to figure out the social, demographic, clinical and biomarker predictor of these outcomes,” explained Cheung.

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The group has not published a peer-reviewed study yet, but Cheung said it has produced information that is being used in real time.

“What we have learned is that it is not just those who were hospitalized who will get long-COVID. People who were not hospitalized also got long-COVID and we found if they have a lot of symptoms at the very beginning of their illness, we are looking at about five symptoms, then the chances of getting long-COVID are much higher,” said Cheung.

Dr. Zachary Schwartz is the medical director for the Post COVID-19 Recovery Clinic at VGH. Photo: Jason Payne.
Dr. Zachary Schwartz is the medical director for the Post COVID-19 Recovery Clinic at VGH. Photo: Jason Payne. Photo by Jason Payne /PNG

Shwartz said clinicians fear reinfection could be very harmful to long-haulers. Cheung said the good news is researchers have discovered vaccines help alleviate long-haul symptoms and may prevent people from developing long-COVID.

She said there remains no cure or proven therapies for long-COVID but she’s optimistic that’s coming.

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“Just two years ago, we really didn’t have anything to treat COVID in the acute care setting and now we have a number of treatments which improve outcomes” said Cheung. “And now we are looking at treatments in the outpatient setting to try to decrease long-COVID both in prevention and in treatment, so I would stay tuned.”

The federal government has promised to spend $20 million a year on long-COVID research. Both Cheung and McGarva would like more.

“That’s not a lot and what about the actual treatment? What about coordinated statistics? What about post-COVID clinics? Half the country doesn’t have them.” said McGarva.

McGarva said governments could also do more to assist long-haulers in accessing financial assistance.

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“I got CERB but can’t get on disability because my wife, who works three jobs to support us, makes too much money. I got 15 weeks (of Employment Insurance benefits) but I was cut off in January 2021, so I have no financial support,” he said. “A lot of insurers still won’t recognize long-COVID. Under Canada Pension Plan Disability you can qualify, even with a negative PCR. They have some money but it’s not easy to get it and it’s not a large amount.”

McGarva said long-haulers have had a long fight for recognition and support. He believes the transmissibility of Omicron means there will be more long haulers. He said health authorities, public health officials and the minister of health need to emphasize the risks posed to everyone by long-COVID.

“These issues with long-COVID are preventable by preventing COVID. I’m not saying lock down but the ramifications of not being able to prevent long-COVID and not putting out the information about the risk and how debilitating that is, you are contributing to the problem and are admitting that you have failed.”

lcordasco@postmedia.com

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