Data, tests and transparency: What Quebec needs to live with COVID-19

For someone immunocompromised like Annie-Danielle Grenier, living with SARS-CoV-2 means constantly calculating risk.

Grenier has Addison's disease and other conditions that affect her immune system, and even what would be for others a mild stomach flu could kill her.

"I've been stuck at home for two years now, and my boyfriend has been in isolation with me, to keep me alive," the Montrealersaid.

As she watched Quebec Premier Franois Legault announce the province's reopening plan Tuesday, Greniersaid she felt many things but mostly, expendable.

"The population is fed up. I'm fed up. We're all fed up," Legault said, calling the province's move to lift most pandemic restrictions over the next few weeks a "calculated risk."

Grenier said she knows many people are fed up, worn down by the pandemic.

"People tell it to my face. Like, 'Yeah, but you know, it has to be for the greater good,' or, 'You know, you're the minority, so it doesn't matter. You take care of yourself, and we'll live,'" she said.

"[It's difficult] being told that, for other people to be able to enjoy themselves, or to not be annoyed with some measures, that I should die. Or that they don't care about if I do."

Grenier said she wants the province to reopen, too, but she said without even knowing how prevalent COVID-19 is in her area, she personally can't take the risk.

"The stats, like if the community transmission is high or low we don't have the data anymore," she said. "It's not really reliable."

Tracking the spread

Grenier is not alone with that concern. Experts say the government needs to give the population more data, and transparency,if it wants people to act responsibly while learning to live with COVID-19.

Quebecended PCR testing for the general public in early January, as testing centres were overwhelmed by the sheer numbers of people infected at the height of the Omicron wave. Thousands of samples were thrown out because they could not be analyzed before they expired.

The government put in place a reporting system for rapid tests taken at home, but few testing kits are available in the province. On Tuesday, only 990 people reported their rapid test results through the site.

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Quebec's interim public health director says millions of Quebecers were infected with the Omicron variant, and as a result the current wave should subside.

Dr. Christopher Labos, a Montreal epidemiologist and cardiologist, said trying to gauge the spread of the viruswill be a challenge for the government.

"It is a problem when we don't have access to widespread testing, when we don't have accurate numbers," he said. "It does become more difficult to know what the COVID situation looks like."

Labos said he is optimistic about the province's reopening plan but said the government needs to pump the brakesif cases rise. And without accurate data, it won't know when those brakes should be applied.

"My hope is that going forward, when the situation improves, we will be able to test people more easily and get a much more accurate reporting picture," he said, "orfailing that, we get access to wastewater data, so that we know if the situation is improving or getting worse."

Early in the pandemic, Quebec was at the forefront of research, testing wastewater for COVID-19. The method allowed officials to track community spread, independent of testing, but the funding for the pilot project ran out in December.

"We can learn to live with the virus but still also monitor the situation and take appropriate steps when things seem to get better or get worse," Labos said.

Better government transparency needed

Legault said as restrictions are eased, it will be up to each person to evaluate the risk and decide what they are comfortable with.

Prof. Simon Bacon, who teaches behavioural medicine at Concordia University, said empowering individuals to make their own decisions is "a really, really important step forward," however,the government hasn't given Quebecersin situations like Grenier'sthe tools to do that.

"People haven't really been given the information and given the opportunity to really evaluate their risk and evaluate the risk of situations," he said.

"What is my risk if I go to the supermarket and I wear a mask? Or don't wear a maskespecially given my underlying health conditions?"

Bacon said that people generally do not underestimate the risk of COVID-19 if given enough information to make an informed decision.

However, he said, the government has struggled with that kind of transparency throughout the pandemic.

"Think of all the press conferences we've had here where they've said, 'We've used data to make this decision.' And then it's like, well, what data?"

Without that data, he said, it will be hard for the government to justify future restrictions, as Labos suggested, especially to a population that is running out of patience with what feel like the government's increasinglyarbitrary decisions.

"It's not the running the marathon they're angry about: it's the shifting of the goalposts and shifting the finish line," he said.

Bacon said a lot of early messaging suggested that the pandemic would end if most people got two doses of a COVID-19 vaccine, for example, but that proved not to be the case.

"If we [later] start to reintroduce restrictions, you're going to hit that same resistance," he said. "And it's going to stem from the fact that you just told us we have to live with the virus."

For Grenier, without enough data to know where she is safe, it means remaining confined, leaving her home only to go to essential medical appointments.

"I agree that some things need to happen," she said. "We need to learn to live with it."

"But live with it not get sick and die with it, you know?"