Young Nova Scotians with health conditions wonder where they stand with vaccinations

After more details of Nova Scotia's COVID-19 vaccine rollout plan were released, some young people with health conditions are wondering when — and if — they will be able to get their shot.

Under the current plan, people below the age of 75 who are immunocompromised or at a high risk for COVID-19 aren't identified as a priority group, unless they are a health-care worker or an "essential" worker, which is still being defined.

In fact, neither the Pfizer-BioNTech vaccine nor the Moderna vaccine are recommended for use on immunocompromised Canadians yet.

Anthony Ha, 36, has diffuse systemic sclerosis, an underlying autoimmune condition, and the medication he takes to manage it further compromises his immune system.

While the arrival of the first batches of the vaccine in Nova Scotia signalled a glimmer of hope, Ha said he and other people who are immunocompromised were disappointed by the details of the vaccine rollout.

"The rollout was listed in three phases, but there was almost no mention of people with chronic conditions or compromised immune systems, and it just feels like that hope was taken away from us," he said.

"We know we're on the list, we know that we're going to be looked at and we're going to be in line somewhere in there, but for them to not even mention that we exist, that just kind of ripped the heart out of us."

On its website, the National Advisory Committee on Immunization says immunocompromised Canadians have not been included in clinical trials, so there's not enough information yet on how they might respond.

"Clinical trials assessing COVID-19 vaccines should continue to be encouraged to include individuals with potential vulnerabilities to disease … to ensure that vaccine options are informed by robust safety, immunogenicity, and efficacy data," it said.

NACI says the vaccine "should not be routinely offered to individuals who are immunosuppressed due to disease or treatment until further evidence is available."

"However, a complete series with a COVID-19 vaccine may be offered to individuals in the authorized age group in this population if a risk assessment deems that the benefits outweigh the potential risks for the individual, and if informed consent includes discussion about the absence of evidence on the use of COVID-19 vaccine in this population," it said.

The website also said "there is limited evidence that immunosuppression is an independent risk factor for severe COVID-19, though evidence is evolving."

In a statement from Nova Scotia's Health Department, a spokesperson said older age is the main individual factor for severe COVID-19 illness. 

"There is work nationally, and here in Nova Scotia though our Clinical Advisory Group, to better understand how other medical conditions may increase the risk of severe COVID and where to prioritize these groups as we move to phase 2 and 3 of our program," the email stated.

'We spent the last year in our homes, alone'

Ha said he understands why older people need to be first in line for the vaccine, and that there is still work left to do to ensure the vaccine is safe for immunocompromised people — but he said he would appreciate more communication from the government and clear messaging they are working on it.

"We spent the last year in our homes, alone. What we really need is for them to reach out to us," he said.

While the pandemic has been challenging, Ha said there is a silver lining: the broader public now has a better understanding of what immunocompromised people go through every day.

"They know that if you don't wash your hands, if you don't maintain your distance from sick people, it can cause harm to us," he said. "In a weird way, it's kind of nice that people are opening their eyes to the plight of people like me."

Concerns of being left behind

Jillian Banfield, also 36, has rheumatoid arthritis and takes medication that suppresses her immune system. Banfield said she is privileged to be able to work from home and has a healthy partner who runs most of their errands. 

During the pandemic, "I mostly removed myself from public life," she said. "I've taken all the precautions and then some."

She said she had hoped for more details about what the vaccine rollout could look for people like her.

"I understand they may be kind of planning as they go because these things are happening very rapidly, but I would like to see a little more thought put into what's going to happen in phases two to three," said Banfield.

"I'm just concerned that those of us with autoimmune disorders or suppressed immune systems are going to get left behind."

Banfield said if she is not able to get the vaccine because of her suppressed immune system, the prospect of having to rely on herd immunity is "kind of terrifying."

"I hope the uptake will be better than the flu vaccine, for example, but it doesn't feel great to be relying on everyone else getting the vaccine," she said. "It's nice to have at least a little bit of feeling of control over these things."

Ha also expressed concerns about having to rely on herd immunity, noting the prevalence of the "anti-vaxxer" movement.

"The possibility of having to rely on herd immunity, I mean, it's a reality, but it's not very comforting," he said.

He said he had to discontinue using his medication for a few weeks when he got his MMR vaccine, which was a "calculated risk." 

Patients being 'omitted,' organization says

Whitney Goulstone is the executive director of the Canadian Immunodeficiencies Patient Organization, a charity that advocates for those affected by primary immunodeficiencies.

In a phone interview from Victoria, B.C., Goulstone said the organization is being inundated with questions from people across the country with primary immunodeficiencies about when they will be able to get the vaccine and if they will be able to take it.

Not being able to give them an answer, said Goulstone, is "the hardest part of my job."

She said she hoped there will soon be a timeline about when Canadians can expect clinical trials for immunocompromised people to get underway, and is calling for them to be listed as a priority group if the vaccine is found to be safe for them.

"We need to ensure that there's a priority so that patients can live some kind of quality of life, and we aren't getting any kind of information about when that may happen when it comes to the vaccine rollout," she said. 

"These patients are just being omitted, which I think is not fair to them."

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