More than a quarter-million people in British Columbia live with a disability. But, according to disability advocates, the Public Health Office has consistently failed to make pandemic-response policies that adequately protects and supports people with medical vulnerabilities.

Despite surging cases over the last several weeks, bars, restaurants, and other businesses in BC have remained open. In the midst of a major surge in hospitalizations this week, provincial health officer Dr. Bonnie Henry announced that people who do not test positive for COVID-19 using a PCR test, but who are presumed to have been infected based on their symptoms, no longer have to isolate for five days—instead, they can go back to work or school as soon as their symptoms subside. 

The province has also given up on using contact tracing as a tool to manage the pandemic, and even close contacts of people who test positive for the virus are told they do not need to self-isolate.

“As long as we are feeling well, in this new context, we can and must continue going to work, going to school, and socializing safely in our small groups,” Henry said on Friday. 

Some living with illnesses feel these policies are offering them up as a sacrifice to secure a future they cannot safely be a part of. 

Victoria resident Julia Spierce says that when the restrictions were relaxed, it felt like she had been asked to give up her health and safety in order to let everyone else go back to their lives.

Since the fifth wave has begun, UBC professor and nurse Dr. Jennifer Baumbusch says there has been a shift in tone. “It’s become more explicit that people with disabilities should be responsible for taking care of themselves by isolating, while everybody else can get on with life.” 

Baumbusch’s work has shown that when restrictions intended to prevent the transmission of COVID are lessened, individuals with disabilities take on increased personal protective measures. While others indulge in nights out and coffee dates, immunocompromised people like Spierce tend to retreat. They are more likely to isolate, more likely to face financial stress from taking voluntary—but potentially life-saving—leave from work, and more likely to suffer mental health effects. 

The Omicron variant, driving the current explosion of cases across BC, has been called (perhaps wrongly) “mild.” For Spierce, and for thousands of others living with immune illnesses, even an asymptomatic COVID infection could cause an autoimmune flare up that would require hospitalization. 

This characterization of Omicron as mild—and the subsequent lack of scientifically-proven restrictive measures in its wake—is particularly fear-inspiring for BC residents who have become disabled by long COVID. Recent studies indicate that as many as one in two people infected with SARS-COV-2 have long-term adverse health effects, regardless of the severity of initial illness.

Vancouver resident Katy McLean has been too sick to leave her home for 17 months, despite her mild initial infection. For her, the PHO’s repeated claims that everyone will be exposed to COVID feels like a nonconsensual gamble against unknown odds. Thinking about the potentially thousands of people whose lives will, like hers, change forever feels “Incredibly stressful,” she says. “I know I’m not alone in [feeling] that. That sentiment is shared by every person I know who has developed long COVID.” 

Compounding effects on health care

BC’s pandemic response poses unique threats to the physical wellbeing of people who rely on consistent medical care—including those with long COVID. This month, a survey of 188,00 British Columbians found that one-in-three respondents have faced longer wait times, and 40% have suffered a deterioration of their health as a result. Across the province, the compounding effects of closing care centers, health care staff shortages, and a surge in the number of people hospitalized with COVID are being disproportionately carried by people who have medical conditions that become debilitating without ongoing care. 

This excess burden begins even before hospitalization. PHO press conferences throughout the Omicron-driven surge have done little to reassure the public that measures are being taken to prevent the health care system’s collapse. Instead, the message is that there will be rationing of care or triage.

For people living with long disabilities, Dr. Baumbusch says, “Even the worry of that adds so much stress.”

In an email to Capital Daily, the Ministry of Health wrote, “People with disabilities will not be discriminated against in the provision of medical care.”

BC’s health care system has been plagued by long wait times since before the pandemic; that has only grown worse since March of 2020. When McLean was referred to a neurologist early into her battle with long COVID, she had to wait nine months. Now, after a recent scan indicated that her COVID infection has caused heart damage, she was referred to a cardiologist. And then, she waited. When asked by Capital Daily how long it took her to see a specialist, she laughed. 

“I’m still waiting.”

The effect of BC’s fifth and most serious wave could continue to cripple the hospital system in BC for many months after its end. With the skyrocketing of Omicron cases, it is possible that there will be a subsequent surge in the number of people living with new and debilitating long COVID. 

“We’re going to see delayed diagnoses, delayed care. People's conditions may worsen because diagnostic testing wasn't available,” PhD candidate and health policy researcher Andrew Longhurst told Capital Daily. All, he says, because the PHO has “failed its duty to prevent people from becoming disabled.”

On top of these difficulties in accessing care, people with medical vulnerabilities sometimes have the impression that there are insufficient measures being taken to protect them from exposure in clinical settings. In December, 2020, Spierce was hospitalized with complications from her immune illness. When she got to the hospital, she was sent to the COVID wing despite her having taken a test elsewhere before being admitted. 

“I was… unvaccinated, on immunosuppressants, and [in the COVID wing] for 48 hours. I told the nurse I thought I was going to have a mental health crisis,” she said. 

It took two days for her to get results from the hospital test; it came back negative.

She was discharged before the psychological toll of her visit was acknowledged. “Island Health called me three weeks later with a list of counselors and other resources I could pay to visit, and then hung up.”

‘I had to pawn my wedding ring’

Looming over all of this is the ambient threat of devastating poverty that frequently accompanies disability. The current EI sickness benefits available after someone catches COVID last 15 weeks; for at-risk people who take a temporary leave during a surge, benefits only last 6 weeks.

After he finally received a diagnosis for long COVID, Burnaby resident Jonah McGarva became eligible for EI sickness benefits. They expired in January of 2021. Since then, he has had no income, but debilitating fatigue and brain fog prevent him from returning to work.

“I may qualify for the pension disability plan, but it’s a four-to-six-month process. And then I’d be pulling from my pension, he says. 

“I’m only 42; I’m 43 in February. So I’d be retiring at 43. That’s depressing. I’ve had to sell the few assets I’ve had. I had to pawn my wedding ring.”

Spierce thinks the implied message from the province—that medically vulnerable people are on their own—is percolating into even the communities it leaves out.  She says a peer recently told her he thinks “at-risk people should just stay home” to prevent suicide among people that are less at risk of serious illness from Covid. 

“By saying just higher risk people should stay home, it’s saying that we’re the only ones who should carry the burden of facing suicide… I want to think that it would also be sad if people in my community took their lives. But what if we did? Would we just be listed as folks with preexisting conditions?”

People living with disabilities are 3.5 times more likely to die by suicide. Several of the people living with disabilities that Capital Daily spoke with for this piece had lost friends to suicide in the last year, or were struggling with suicidal ideation themselves—typically after long periods of inability to receive specialist care for their conditions.

“The province hasn’t taken a disability justice lens to any of the pandemic response,” Dr. Baumbusch told Capital Daily. “That would require them to actually work with people with disabilities at the table. That’s not happening.” 

In BC, the PHO is telling residents to learn to live with the virus. But for people with disabilities, there is no learning to adapt to the vigilance, nor to the risk-taking, that the province’s pandemic response demands of its most vulnerable residents. A lack of structural support does not become less heavy to carry over time—the challenges only add, and add. 

“The impacts of the pandemic are quite cumulative,” according to Dr. Baumbusch. “It’s not a stable [amount of] pressure. It’s escalating.” 

-With files from Brishti Basu