Parents push for vaccine priority

·6 min read

Cindy and Ray Brownlee are terrified for their daughter.

Becky, who is 39, has Down syndrome, type 1 diabetes and asthma. Having Down syndrome means her immune system is compromised. She had to stop working as a Walmart greeter, a job she has held for more than 15 years and where she is much beloved by staff and customers alike.

Unlike others with Down syndrome, she does not live in a congregate or group living setting — she lives with her parents — and is therefore not prioritized for the vaccine. This is despite the fact that people with Down syndrome have five times the hospitalization rate as compared to the general population due to COVID-19 and 10 times the mortality rate.

"The province’s vaccination eligibility criteria is ever evolving as we work our way through this pandemic. At this time, Becky is not eligible as per vaccination eligibility," a provincial spokesperson stated by email.

"Currently, Focused Immunization Teams are visiting congregate living facilities — several of which are home to individuals with either physical or intellectual challenges. Eligibility for general population was announced recently: 95 and over and adjusted on a regular basis pending appointment availability. First Nations eligibility began at 75-plus and is adjusted on a regular basis."

According to the province’s vaccine queue calculator, there are 501,597 Manitobans ahead of Becky.

Back when the pandemic reached Manitoba, Becky developed double pneumonia. Her parents were very concerned it might be COVID-19. That’s when her doctor told her to stop working as a greeter. He also said she couldn’t go anywhere. She can take walks, she can be in the car with her parents, and she can go to the doctor’s office.

In an effort to secure Becky a vaccine, the Brownlees have written to Premier Brian Pallister, Health Minister Heather Stefanson and Brandon West MLA Reg Helwer.

"All we got back was this standard form letter," said Cindy.

Cindy is familiar with one other adult in Brandon with Down syndrome and very significant health issues who is living in their own home.

"We’re familiar with lots of other people who have Down syndrome, but they’re living in congregate or group homes," she said.

The Brandon Sun attempted to call the Manitoba Down Syndrome Society for relevant statistics, but the office is closed and the message said calls would only be returned on Thursday.

Ray supports other vulnerable groups prioritized for early vaccination, such as First Nations and residents at personal care homes and congregate living and group settings. However, he believes it is wrong to exclude Becky and other vulnerable individuals.

"Everything that comes into our house is wiped down with a disinfectant — groceries, anything. We had the plumber here not too long ago and the whole house was disinfected wherever he was. A lot of care and caution," said Ray.

"It just seems to me that we’re doing our share, but we’re not getting consideration on the other end."

Meanwhile, Brandon University professor Bruce Strang, whose teenage son Sean has Down syndrome, told the Sun on Tuesday that he’s filing a human rights complaint regarding the province not including people like his son in its vaccination plans.

He also said research has shown that individuals with Down syndrome are more likely to be hospitalized with COVID-19 or die because of the virus than people without it, so Strang believes the province should place them and others with disabilities at a higher priority to receive their vaccinations.

Strang previously filed a human rights complaint against the province and the Brandon School Division for not appropriately considering the needs of students with disabilities and health conditions when making their COVID-19 back-to-school plans.

"The provincial government and the chief medical officer of health have, in my view, completely ignored disability issues in the vaccine rollout," he said. "The government is once again failing to live up to its duties under the Human Rights Code, and it’s discriminating against people with disabilities in the vaccine rollout."

According to Strang, he has tried to reach officials at Manitoba Health to speak about the issue, but was told that no one would speak with him over the phone. Two weeks ago, he sent an email to the office of Health Minister Heather Stefanson, to which he said he has only received an automated reply.

The email sent to Stefanson’s office said that if he does not hear a reply, he will make a complaint to the provincial Human Rights Commission. A copy of this email was provided to the Sun.

The professor pointed to an online town hall that chief provincial public health officer Dr. Brent Roussin participated in on Feb. 8, during which another Manitoba parent expressed concern about her daughter with Down syndrome and what could happen if she contracted COVID-19 as she gets sick easily. The Brownlees also participated in the town hall.

The parent asked why people like her daughter are not being given vaccination priority.

"When we look at the modelling, the best way to quickly protect the most vulnerable Manitobans is the age-based approach," said Roussin.

"If we took a risk-based approach, we actually protect less Manitobans quickly who are at risk. (These) are the decisions we’re forced to make when we have extreme vaccine scarcity, but there’s no doubt that there’s going to be people who are at higher risk that don’t get vaccinated."

Strang didn’t appreciate Roussin’s response.

"The answer was essentially nothing," said Strang. "That they knew that people with Down syndrome who have greatly increased risk of medical issues and death due to COVID-19, but they were going to concentrate on rolling out the vaccine by age only to the general population. That to me is an astonishingly lazy answer."

Additionally, the Brownlees said they are afraid that Becky will be offered the AstraZeneca vaccine, which operates in a different fashion than the Pfizer and Moderna vaccines and is said to be less efficient.

Strang and the Brownlees aren’t the only ones concerned about children and adults with Down syndrome. Canada as a whole is ignoring the issue, while other countries and some states in the U.S. have prioritized those with Down syndrome to be vaccinated.

Cindy cannot understand why Roussin’s science is not the same as the science around the world.

Parents in Quebec have launched a Canada-wide petition at bit.ly/3kCQT7r

Ready for My Shot is another grassroots advocacy group and can be found at readyformyshot.ca

Michèle LeTourneau, Local Journalism Initiative Reporter, Brandon Sun