Advocates plead for people with Down syndrome to move up COVID-19 vaccine priority lists

OTTAWA — Families of people with Down syndrome are sounding the alarm, as evidence suggests they are at an increased risk of severe complications due to COVID-19 but are left off of most vaccine priority lists.

Rissa Michaly and Evelyn Lusthaus are both mothers of adult children with Down syndrome. Together, they’ve started a petition to have Canada’s 45,000 people with Down syndrome included in the initial phases of vaccine prioritization.

“Our goal is to move this forward, in whatever way two lowly mothers can,” MIchaly told CTV News.

The federal government earlier this week revealed its updated recommendations for vaccine prioritization. The document does not specifically mention Down syndrome, though “adults 16-59 years of age with an underlying medical condition at high risk of severe illness due to COVID-19 and their essential primary caregivers” is one of the recommendations for Stage 3.

In Quebec, people with Down syndrome are eighth in priority, alongside adults under the age of 60 with chronic conditions. While tweaks to the province’s priority list are expected in the coming weeks, it’s unclear how their current list will be changed, meaning Quebecers with Down syndrome may have to wait months before a vaccine will be available to them.

Recent research suggests a move up the prioritization list is warranted. A research letter published in Annals of Internal Medicine back in October suggests that people with Down syndrome are 10 times more likely to die from COVD-19 than others.

Experts believe the added risk comes from the fact that the bodies of people with Down syndrome age prematurely, but some scientists argue biological age is still the primary risk factor for COVID-19. 

 “The science is always evolving,” Dr. Nicholas Brousseau, an infectious disease expert with the National Institute of Public Health in Quebec, told CTV News. “We are monitoring the evidence regarding … risk factors we have to take into consideration.”

Considering the risk factors, Lusthaus’ daughter Hannah has moved back home after living independently for years.

“I wanted her to be home with me when COVID hit because in spite of her great strengths, it is very difficult,” she said.

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