B.C's long-COVID patients worry as in-person clinics close

Deborah Brown outside her home in Fort St. John.

When it began, no one listened to her when she cried, except her mother, who held her like a baby when the pain was at its worst.

The rashes felt like fires burning her skin. Red dots appeared and blisters popped up. Her foot turned black, then blue, then green. She couldn’t get any relief, or predict where the next blaze of pain would erupt.

From the time she contracted COVID-19, in February 2021, just weeks before she qualified for a first COVID-19 vaccine, Deborah Brown’s body, and her life, has been in a tailspin.

What made it worse was that she felt completely alone fighting this conflagration.

Three years ago, Brown was a vital, energetic insurance professional working in a leadership role and raising a teenager in Fort St. John.

“I was at the top of my game, and my life was great,” said Brown.

Her initial bout with COVID was rough, but she recovered enough to return to work after a few weeks. There was “some strange stuff,” brain fog and tiredness, but nothing she couldn’t handle. Or so she thought.

“I pushed through,” said Brown.

Then, one day everything changed. “My brain stopped working. I didn’t know what I was doing.”

Since that day, Brown has been on a harrowing journey with long COVID, or post-COVID-19 condition.

Brown is one of 1.4 million Canadians struggling to cope with long COVID, a little-understood condition in which a person has continuing symptoms three months or more after their SARS-CoV-2 infection. These may include respiratory, cardiovascular, neurological and cognitive impairments, painful skin rashes like the kind Brown experiences, chronic fatigue, brain fog, muscle pain and blurred vision.

Like thousands of others, Brown feels she was largely left on her own to navigate a system that offers a patchwork of options and no hope of a cure.

The recent announcement from provincial health authorities that B.C. will close its four dedicated in-person long-COVID clinics on April 1 and “evolve” to a virtual model has raised concerns among long-COVID patients. Patients, advocates and their families fear they are being pushed aside.

Spencer van Vloten, a disability advocate speaking out about what’s needed for long-COVID patients.

“When you see this important source of support shutting down, it sends a message: ‘We are moving on,’ where the reality is that the problems we are going to face due to long COVID have just begun,” said Spencer van Vloten, community advocate and editor of bcdisability.com .

In a report released March 9, Dr. Mona Nemer, Canada’s chief science adviser and chair of the task force on post-COVID-19 condition, called COVID-19 the head of the pandemic and long COVID the tail. The report says that 1.4 million people, or about 15 per cent of people who contracted COVID-19, experience lingering symptoms, but acknowledges that the number of people with long COVID may be greater due to lack of established diagnostic criteria.

Nemer said Canada could face a “mass disabling event,” and that post-COVID-19 condition raises the risk of serious chronic diseases, including diabetes and hypertension. For those that have medically defined symptoms, like cardiovascular problems, standard care is easier to access, but for those with medically undefined symptoms, such as brain fog, chronic fatigue and Brown’s rashes, there are fewer alternatives.

Nemer’s report also highlights the need for greater research into the impact of long COVID on children. In B.C., pediatric patients are directed to B.C. Children’s Hospital, and seen by physicians who have expertise in post-COVID symptoms. Since April 2022, B.C. Children’s has treated 16 pediatric long-COVID patients.

In response to chief science adviser’s report, the federal government announced $29 million in funding for the development of clinical guidelines and the creation of an online network where researchers and clinicians can exchange information about long COVID with each other and the public.

Van Vloten said he’s pleased that Nemer’s report explicitly recognizes the condition, and its disabling effects, but the move to virtual care and information-sharing doesn’t go far enough to help patients with continuing issues.

“A resource hub is limited in what it can do, it’s not going help people who are exhausted and ill become an expert on their own illness,” said van Vloten.

Jonah McGarva, who has had long COVID for three years, said he was overjoyed that the federal government has publicly recognized the seriousness of long COVID, but that is overshadowed by B.C.’s move to close in-person clinics, which was announced in February.

Jonah McGarva is a Covid long-hauler.

“The federal government wants to do something about this, but the provincial government is walking away from it,” said McGarva. “By closing these clinics and relying entirely on Zoom, it’s only going to further minimize the community.”

McGarva, who has had long COVID for three years after an infection at the beginning of the pandemic in March 2020, said that patients have been disbelieved, misunderstood and left on their own to fight for treatment.

McGarva, who lives in Burnaby, was referred to the Abbotsford long-COVID clinic, but because of the distance and his illness, he has been attending virtually since 2021.

“It’s not working at all,” said McGarva. “There has been a real lack of followup. They’re not doing anything, my GP has done everything.”

He worries about patients that don’t have a primary care doctor, or whose physicians lack education in the treatment needs of long haulers.

“I’m a statistical anomaly, I have a family doctor that cares.

“Just having that human connection and having them comfort you and say I understand and I believe you means a thousand times more than anything else. A lot of patients are depressed, they are suicidal, and the one-to-one contact is imperative.”

Long-COVID patient Sara Urban was told on a phone call last week that she was being discharged from Abbotsford’s in-person long-COVID clinic.

“I got a phone call for my nine-month checkup, and during the call they let me know they were going to be discharging me and closing the clinic,” said Urban. “They said they didn’t know what the next step would be, and no one really knows how this is going to evolve.”

Sara Urban, a former elementary school teacher who is struggling with long COVID.

Urban, a 28-year-old who was an elementary school fine arts teacher in Pitt Meadows before long COVID took her down in 2021, has dealt with brain fog, cognitive problems, malaise, gastrointestinal problems, cardiac problems and severe muscle weakness. She is concerned that she will be left on her own to manage the illness.

“It’s extremely hard to self advocate when you have long COVID. Every day is just about survival and trying to live and fulfil your very basic needs.”

Dr. Adeera Levin, executive director of the post-covid interdisciplinary clinical care network, said the move to a virtual care model shouldn’t change the quality of care, and came about naturally as needs evolved.

“Most of the visits had turned into virtual, even though there were physical spaces, and the number of referrals had dropped off,” said Levin. She called the change “an efficient use of health-care resources.”

“It made sense to consolidate into one provincial virtual clinic, with opportunities as required to be seen in person directed by the virtual team.”

Dr. Adeera Levin.

The delivery of telehealth has improved since COVID, and offers some advantages, said Levin.

“We can do it well. Travelling is hard for people. It also is expensive. People were feeling satisfied with the virtual interactions, and it also allows for a broader reach.”

Levin said the virtual clinics will meet the continuing needs of existing patients and will serve new patients.

The province’s post-COVID clinical-care network has had 7,682 referrals since its inception in July 2020. Levin said there have been over 9,000 clinical visits in total, and that 3,169 people have “successfully transitioned out of the long-covid care, with most averaging 12 months to recovery or ability to manage symptoms and return to normal lives.”

In the past few months, referrals had dropped to about 80 a month across the province, said Levin.

The provincial network’s focus is two-pronged: providing clinical care to patients and supporting data collection and research as the science around long COVID evolves, said Levin.

Dr. Kim McGrail, a professor in the UBC school of population and public health, said that while virtual clinics provide a potential benefit by ensuring people across the province have access to treatment for long COVID (provided they have adequate internet service), primary-care providers will need support to make the model work.

“One of the important things will be information flow between the virtual clinics and the specialty services and back into the primary-care system, making sure that people who have these symptoms and conditions are attached to primary care,” said McGrail. “We have a lot of people that aren’t in primary care, and this adds another load,” said McGrail.

For those who don’t have a primary-care physician, Levin said patients shouldn’t hesitate to go to a walk-in clinic and ask for a referral to the post-COVID recovery network.

“There is nothing stopping them from giving a referral,” said Levin.

Levin believes there is a lot of hope for patients.

“The fact that the numbers aren’t increasing is something very hopeful,” said Levin. “A substantial number of people do get better after a 12-month period. So many people are working on this problem, and that is something hopeful,” said Levin.

Patients participating in the new virtual long-COVID care will have opportunities to enrol in research studies that could potentially lead to new treatments. “Participating in clinical studies does help people,” said Levin.

But patients like Brown, who was treated virtually by the long-COVID clinic at St. Paul’s hospital but for whom every day is still a struggle, aren’t convinced that spending on research and websites are going to make a difference where it matters most: in her body.

“It doesn’t assure me that I’m going to be able to get back on my feet again. You’re putting $20 million into this — what are you specifically going to do to help those of us out here, wandering lost trying to deal with our lives while dealing with these issues?

It gives me no sense of hope.”

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