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for those with compromised immune systems, covid remains a death threat

some people with compromised immune systems have been living in isolation since early 2020.

by maija kappler

published dec 16, 2022

8 minute read

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8 minute read

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immunocompromised canadians long to return to normal, too

without a way to fight the potentially virus, people with compromised immune systems face risk just leaving their houses. getty

when derek clark first heard about covid, he started having panic attacks. the 61-year-old resident of caledon, ont. had been released from the hospital in late 2019 after a double lung transplant to treat pulmonary fibrosis, which damages lung tissue, just in time for christmas. and while he was looking forward to spending the holidays with his family after months at toronto’s general hospital, once news from across the world started to emerge about the novel coronavirus, that relief was replaced with something else: intense fear.

“because this was a respiratory disease, you can probably appreciate that in any solid organ transplant community, there was tremendous fear, high anxiety, stress,” he says. “on a scale of one to 10, the stress level was 100.”

it was about a year after his transplant that clark was among the first canadians to get a covid vaccine, something that initially offered him comfort that he’d be protected from the potentially deadly virus. but it soon became clear that while it was a preventative measure for most people, it was not for those with organ transplants.

because the immune system’s natural reaction is to attack new organs as foreign invaders, transplant recipients take drugs that make the immune system less aggressive. the t-cells form the immune system’s “memory” and they are key to vaccines working: the covid vaccine introduces protection that the t-cells will then call on in the future when exposed to the virus. but if you have to curb your t-cells’ activity so that your body doesn’t reject your transplanted lungs, for instance, the covid vaccine is much less functional.

“the irony here is, the drugs that keep us alive, prevent us from having an adequate level of protection from covid-19 or other infections,” clark explains.

and while most people’s bodies can recognize the difference between the body’s own cells and invaders like viruses, bacteria, and parasites, for those without a healthy immune system, that defence doesn’t work. there are over 500 conditions that can compromise a person’s immune system, and even the most minor of infections can lead to severe complications.

in early 2020, as the general population struggled to understand just what covid was and how scared we should be, many people living with compromised immune systems were already starting to take precautions, according to whitney ayoub goulstone, executive director of immunity canada (formerly the canadian immunodeficiencies patient organization).

“some people isolated even before there was a lockdown [order],” she says. “this community, as a vulnerable community, isolated right away in february when we started hearing of the odd case in canada. it has been a terrifying two and a half years for these patients and their families.”

there’s isolation in a weak immune system

kim hanson knows just how terrifying. diagnosed at age 37 with common variable immunodeficiency (cvid), her body doesn’t naturally produce antibodies to fight off infection. she is also vulnerable to catching bacterial and viral infections, especially in the upper airway, sinuses, and lungs.

in january 2020, after a vacation to disney world, she returned home to edmonton to stories about covid that were dominating the media. she took precautions: isolating from others, wearing an n95 mask, and working from home. hanson also had her groceries and medications delivered to her so she wouldn’t have to go out. soon the rest of the world caught up — her colleagues also started working from home, and her kids had school online.

“i was living like everyone else was,” she said. “it was nice that i wasn’t standing out, or doing anything outside the norm.”

but the feeling of camaraderie was short-lived. alberta’s state of emergency ended in june, and businesses started opening up, people were back in restaurants and theatres, and many returned to in-person work. when she and her family members wore masks, they sometimes got nasty comments from strangers. it was then that hanson began to feel a sense of being ‘othered’ because of her health.

“the political atmosphere here has been challenging,” she says. “there’s this huge political and societal push to live like normal, and if you don’t, you are actually at risk of being attacked physically, or certainly bullied. but i’m living in isolation to protect my life.”

despite taking precautions, hanson has contracted covid three times. she evaded the virus until april 2022, after sitting masked on a partially-enclosed patio chatting with the mother of one of her children’s friends for about 20 minutes. two days later her friend had covid, and soon after, so did she.

at that time, paxlovid — an antiviral pill that can reduce the risk of hospitalization and death in high-risk people — was only available in alberta to people who got a positive result on a pcr test within five days of infection. because hanson’s doctor was away, she couldn’t access a pcr test in that brief window.

that first experience was by far the worst, hanson says. after an acute phase that lasted about four weeks, she started having trouble breathing, as well as brief fevers, each lasting about 20 minutes. she began waking up in the middle of the night with a frighteningly rapid heart rate and crushing chest pain. she went to the emergency room several times, but they could never find anything wrong.

“eventually i just gave up and lived with it,” she says, adding that she still regularly experiences the rapid heartbeat, along with shortness of breath and chest pain — symptoms of long covid, which have only worsened each time she contracted the virus.

the second and third infections happened twice more over the summer — once in july and again, just four weeks later, in august. she was able to get paxlovid both times, which “made a world of difference,” she says. still, there are symptoms that have remained. walking a short distance, like from her bedroom to her bathroom, is a major struggle and can cause shortness of breath. she can no longer braid her hair, since lifting her arms above her head causes her heart rate to spike.

‘sick and tired for life’

while ayoub goulstone understands the toll that the pandemic has taken on the mental health of the general population, and why many people opted to go mask-free once mandates were lifted. but she does hope people will think about the immunocompromised when they decide what precautions to take.

“we’re in our eighth or ninth wave,” she says. “everyone is sick and tired of this pandemic … but we’d love the general public to understand that this vulnerable population is sick and tired for life. it’s been a very long three years and we are all wanting to move past this, but there is no moving past this for this community.”

clark, the double lung transplant recipient, also caught covid several times despite precautions, requiring hospitalization where he received monoclonal antibody treatment. these lab-developed antibodies aim to block the virus from entering into human cells.

“i had four vaccine doses, but i had no antibodies,” he says.

derek clark receiving a covid vaccine

his doctors had the difficult task of reducing his medication enough that his immune system would generate a response to covid, but not so much that it would start rejecting his new lungs. he was lucky — the treatment worked. but the monoclonal antibody treatment he received wouldn’t currently be effective in fighting the new strains of the virus.

treatments to help the immunocompromised fight covid

besides paxlovid, there are other treatments that have been helped the immunocompromised population mount a modest fight against covid. evusheld, a combination of two monoclonal antibodies, it is a prophylactic treatment, meaning it can help prevent covid even before a patient has been exposed to the virus. it was approved by health canada in april.

immunity canada has been advocating for the provinces to grant priority access to evusheld to people with compromised immune systems, as they did with covid vaccines and with paxlovid, but it hasn’t been easy.

“we assumed that when evusheld came out, it would follow a very similar pathway to the vaccine access and to paxlovid,” ayoub goulstone says. “we were incorrect.”

quebec was the first province to issue its recommendation that immunocompromised patients should access the drug. ontario was second, but for reasons ayoub goulstone still doesn’t understand, it did not recommend evusheld for immunocompromised people.

“we objected,” she says. “we had a letter-writing campaign, we wrote to the minister of health, we wrote to public health … but we never we never heard anything. they didn’t give us any reasoning for their decision.”

the ministry of health had not responded to healthing’s request for a statement by press time.

“ontario was kind of an outlier,” ayoub goulstone says, referring to the fact that all of the other provinces recommended evusheld for immunocompromised patients. it’s also the country’s biggest province, with a population of over 13 million people, a number that makes up nearly 40 per cent of canada’s total population.

‘i’m not the mom that they remember’

for clark and hanson, as covid remains a threat, they continue to make life-affecting sacrifices for fear of getting sick again. while clark feels safe socializing outdoors during the summer, his social life closes up significantly during the winter months. and this christmas, he won’t be seeing anyone beyond immediate family.

hanson rarely goes without a mask when she leaves the house — even when she’s outside. and though she doesn’t mind making sacrifices herself, she worries about the impact on her family. she wants to be able to be active with her kids, to go snowshoeing in the winter and hiking in the summer.

“i know that it’s going to have an effect,” she says. “i’m not the mom that they remember.”

clark, too, wants to live the way he lived before, or the way he sees other people living — with some level of precaution, but not totally isolated.

“the bottom line message is, people in the immune-compromised space need help,” he says. “we need help to live normal lives again, and to be on a level playing field with the rest of the population. we deserve a normal life too.”

and while immunity canada continues to advocate for measures like more ppe, better ventilation, access to hybrid schooling and work-from-home, and better access to treatment for both physical and mental health, the immunocompromised community needs help and support now. there are particularly intense fears around long covid — a condition still not well-understood that, from january 2020 and august 2022, affected almost five per cent of canada’s adult population according to statistics canada.

“people are terrified about long covid,” ayoub goulstone says, adding that reported wait times of up to a year to access long covid clinics is not good enough for immunocompromised patients.

“we need to prioritize vulnerable communities that have been living in isolation for so long.”

maija kappler is a reporter and editor at healthing.

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for those with compromised immune systems, covid remains a death threat

some people with compromised immune systems have been living in isolation since early 2020.

‘complete change in our quality of life’: long covid a burden for many canadians

opinion: lack of access to paxlovid could cost elderly ontarians their lives

there’s isolation in a weak immune system

‘sick and tired for life’

treatments to help the immunocompromised fight covid

‘i’m not the mom that they remember’

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for those with compromised immune systems, covid remains a death threat

some people with compromised immune systems have been living in isolation since early 2020.

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