Family begged to have sister with Down syndrome vaccinated sooner. Now she’s on a ventilator with COVID-19

Ottawa

An Ottawa woman's sister with Down syndrome is currently on a ventilator from COVID-19, but she feels all this could have been avoided if her sister and others with Down syndrome had been prioritized for an earlier vaccination.

Demetra (Toula) Zouzoulas, 44, shown on her birthday. Her sister says she asked repeatedly if Toula could be vaccinated before those with Down syndrome became eligible. She says every request was denied.(Submitted by Olga Zouzoulas )

Toula Zouzoulas, 44, who has Down syndrome, has spent the last year terrified of catching COVID-19, according to her sister Olga Zouzoulas.

Now, Toula is on a ventilator, fighting for her life in the ICU of Montfort Hospital in Ottawa after testing positive.

Zouzoulas said she feels all this could have been avoided if her sister had been vaccinated, arguing that Toula and others with Down syndrome should have qualified sooner.

Under Ontario's vaccine rollout program, those with intellectual or developmental disabilities are considered high-risk under Phase 2, but didn't become eligible until May 3 — too late for Toula who contracted COVID-19 a week earlier.

"The government didn't see them as the highest risk and they failed. They failed my sister," said Zouzoulas.

"She deserves to be protected … and she wasn't."

Toula lives in a COVID-19 hotspot in Ottawa with her elderly parents, one of whom is considered high-risk and requires home care services. The parents qualified for a vaccine in March, as did Olga, who is her mother's caregiver. But Toula had to wait.

Repeatedly denied

Given these circumstances and the fact that Toula has Down syndrome, Zouzoulas tried repeatedly to have her vaccinated as early as possible but said every request was denied by Ottawa Public Health (OPH), who told her Toula didn't yet qualify.

In mid-April, Toula developed a stomach ulcer that required surgery. Complications after the surgery kept her in hospital longer.

Then in late April, Toula tested positive for COVID-19 while in hospital and is now in the ICU on a ventilator.

"It's horrible. She should not be in this situation. She needs to be home," Zouzoulas said.

In Ontario, people with Down syndrome were put in an at-risk category that gave them vaccine access in Phase 2, but that still left Toula waiting until May.(Jean Delise/CBC)

People with Down syndrome have 'increased risk for dying'

There have been campaigns across Canada, from both organizations and families, to get people with Down syndrome vaccinated sooner.

Yona Lunsky, professor at the University of Toronto, who specializes in developmental disabilities and health care, says it is a good thing that Ontario named people with Down syndrome and other developmental disabilities as a priority — even if vaccinations are still too late for some.

Not every province in the country has done so.

"I think the challenge with Phase 2 is that there were so many different groups to be included," Lunksy said.

"Certainly the research shows that people with Down syndrome, regardless of where they living, if they get exposed to COVID, then it's harder for them to fight that infection and others and they're at increased risk for dying."

Lunsky said that alone is "a really good reason for us to take good preventative action, to support them as best we can to stop them from getting ill and to treat them as quickly as possible."

The key, according to Lunsky, is not just making people with developmental disabilities a priority group for vaccination, but "actually doing everything you can to get the needle into people's arms."

'They need to be protected'

OPH said it couldn't comment on any particular case, but that it's "obligated to follow" the order of vaccination priority laid out by the province.

In a statement, it said only "in select, rare situations where the provincial guidance is not explicit or not yet determined" does the city's taskforce provide interpretation or recommendations on eligible populations.

Ontario's Ministry of Health has not replied to a request for comment from CBC News.

Zouzoulas is still left wanting answers — and a change if anything like this should ever happen again in the future.

"The Down syndrome population, they can't be put [in the queue] where they were this time and they need to be protected…. She may not matter to them, but she matters to us."

ABOUT THE AUTHOR

Nicole Williams is a video journalist with CBC Ottawa. She previously worked as a reporter with CBC P.E.I. and as an associate producer with CBC News in Toronto.

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