People with disabilities say B.C.'s COVID-19 vaccine priorities leave them unprotected

For the last two weeks, Troy Lindstrom has been checking his mail for a letter confirming that his disability meets B.C.'s definition for "clinically extremely vulnerable," giving him priority access to a COVID-19 vaccine.

The Prince George illustrator has psoriatic arthritis, requiring him to take immunosuppressive drugs that make him especially vulnerable to infection with the novel coronavirus. He believes that should make him eligible for a vaccine, but a letter has yet to appear.

"Nobody I've talked to in B.C. that is vulnerable has gotten a letter," Lindstrom told CBC News.

He's one of numerous B.C. residents with disabilities who've become increasingly concerned about how provincial health officials are handling the rollout of vaccines to vulnerable people. They say the current criteria exclude swaths of people who are more likely to become seriously ill or die from COVID-19, and they've been kept in the dark about how B.C. has arrived at its definition for "clinically extremely vulnerable."

People like Lindstrom have been told to wait until April 15 to see if their letter arrives, but in the meantime COVID-19 cases are surging and more infectious variants of the virus are taking over.

"We're the ones sitting at home isolating ourselves. We're doing what we're supposed to do," Lindstrom said.

"They forget about us."

In B.C., about 200,000 people qualify as clinically extremely vulnerable. Next door in Alberta, which has a smaller population and a lower proportion of disabled residents, according to Statistics Canada, about 945,000 people with underlying conditions have been prioritized for vaccination.

A statement released this week by the disability advocacy groups Dignity Denied and BCEdAccess raises the alarm about how B.C. has decided who makes the cut.

For example, people with spinal cord injuries aren't included in the priority groups for B.C., "despite being a population 37 times more likely to die of pneumonia than the general population, due to weakness and/or paralysis of the chest and abdominal muscles, which affects clearing lungs by coughing," the statement says.

The groups point out that B.C.'s list of eligible conditions overlooks people with multiple overlapping diseases and disabilities, many rare disease patients and people who can't be treated with the standard medications and protocols used for COVID-19, as well as caregivers for disabled children who are too young to be vaccinated.

There are also concerns that the same people who have been left off B.C.'s priority list are more likely to be denied ventilators and other critical care options if the province's hospitals become overwhelmed.

In Ontario on Wednesday, the Toronto Star reported that a provincial order was in the works to indemnify doctors from liability for making triage decisions allocating scarce resources to patients they believe to have the best chance of surviving.

"No one who might be denied a vent under triage protocols should be denied early access to vaccine," the statement from Dignity Denied and BCEdAccess says.

Calls for more transparency

BCEdAccess chair Tracy Humphreys said her group has written several letters to the province throughout the pandemic about prioritizing the needs of people with disabilities, and "this is one of many situations where we feel like it's been an afterthought."

What she really wants is more information about how the province makes decisions like this one.

"Generally in B.C., the transparency of information has not been good during the pandemic," Humphreys said.

"Transparency of information makes people feel safer. It makes them feel more comfortable, and it would certainly help disabled people to feel that things are being considered in a careful and measured way."

Provincial Health Officer Dr. Bonnie Henry addressed some of the concerns from people with disabilities in a press conference last week.

"Those groups are based on data and evidence and science, and we ask people, please be patient," she said.

"Physicians and people who are concerned they are not on the list, we need your support to stick with these categories as they have been developed."

'We are being left out'

Some advocacy groups question the data the province has used to create the list.

Brenda Lenahan, a representative for B.C. Parents of Complex Kids, points out that there's not a lot of information on how COVID-19 affects people with disabilities because those who can have largely remained isolated in their homes since the pandemic began.

"We are being left out because we're not a statistic, but we're only not a statistic because of this intense amount of work we've been doing to protect our families," said Lenahan, who has a six-year-old son with complex disabilities.

Even for those who have received a letter, there can be confusion about how they were chosen.

William McCreight is one of the lucky ones, and he's already received his first dose of the vaccine. The Kamloops resident is quadriplegic, which doesn't qualify him for the list. He suspects he made the cut because he had his spleen removed, but no one has confirmed that for him.

While he's grateful to be protected, he's also frustrated about the lack of clarity around the decision-making process.

"What they're doing just seems to be in the shadows," McCreight said.

"To have someone to decide things on behalf of us, especially when we are more than capable of deciding things on our own or having our own opinions, I find that to be a little bit frustrating."