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What ‘living with COVID’ really means for so many people

Introduction by Croakey: As Australia follows other countries in relaxing COVID public health measures, the needs of many Australians are being ignored.

People with disabilities and chronic illnesses, the aged, and Aboriginal and Torres Strait Islander people are at increased risk from these policy changes.

But who is listening to their concerns?


Jennifer Doggett writes:

As someone who has been living with cancer for 17 years, Glen Ramos knows a bit about managing risk.

Ramos is the father of two school-aged boys, living in South Sydney. He’s worked in health policy and advocacy for over 25 years and is currently a director of Australian Thyroid Foundation and a Volunteer Ambassador at the Cancer Council NSW.

His rare form of cancer, a medullary thyroid carcinoma, is incurable, with variable life expectancy, and means that he lives with active tumours which require constant surgery.

In the pre-COVID era – and even in the early stages of the pandemic – Ramos was comfortable assessing his risk of living in the community as an immunocompromised person.

But the rise of Omicron and the removal of many of the COVID public health measures has changed all this.

Since December, Ramos has been struggling to balance the risks and benefits of the constantly changing and uncertain environment.

“You can’t live like a total hermit but the situation at the moment is extremely uncertain,” he told Croakey.

Ramos is concerned about the uncertainty surrounding total case numbers given the inconsistent use and unreliability of rapid antigen tests (RATs), and that PCR testing is being discouraged.

“How can you manage risk without knowing what the situation is?” he asks.

“I’m not asking everyone else to manage my risk – we can’t have a world where everything revolves around the people at the highest risk – but also we shouldn’t have the healthiest person setting the bar during pandemic environments. People like me who have always able to manage our own risk can continue to do so as long as we are given the information we need.”

Ramos is also very frustrated about the lack of action to reduce transmission in high-risk environments such as schools and aged care facilities.

“I’m currently keeping my kids home from school because of the risk of them becoming infected at school and additionally bringing it home,” he says.

“Some people think I’m being overly cautious but it’s clear that despite having ample warning, many schools have not put basic protections, such as adequate ventilation, N95 masks, air purifiers, or CO2 monitors, in place to reduce transmission risk.

“What world do we live in when an airborne virus is killing people and we don’t have to wear masks? My mind struggles to make sense of this.”

Patient advocate Glen Ramos

Global perspectives

People with chronic illnesses and disabilities in other places are also raising similar concerns, as countries such as Denmark, the UK, Ireland and the Netherlands relax COVID restrictions, despite high case numbers.

Fazilet Hadi, head of policy at Disability Rights UK, says there remains a small – but still significant – number of disabled people who cannot participate in day-to-day life because of the risk of severe illness or death from COVID. And disability charity Scope said it could leave some people “gambling with their lives”.

A report in the UK Guardian highlighted warnings from scientists and advocates consumer groups after Prime Minister Boris Johnson announced plans to lift all COVID restrictions – including the requirement to isolate after testing positive – in England a month early.

Fiona Loud, policy director of Kidney Care UK, urged the Johnson Government to share their plans with the nation’s 500,000 immunosuppressed people and the evidence for their decision-making.

“Abandoning all measures without preventive treatments, free testing, and a duty not to expose immunosuppressed people to COVID-19 unnecessarily risks making us into second-class citizens,” she said.

The Guardian also reported the concerns of Ceinwen Giles, who has reduced immunity after cancer treatment. She said: “There seems to be the perception that somehow immunocompromised people are very old and very sick and it doesn’t really matter. If you are old and sick, you still matter. This just means we’re being shut out.”

Writing in The BMJ, a group of academics has criticised the United States Government for failing to centre those who are most vulnerable in its pandemic response. They argue that this approach removes responsibility from governments for appropriate public policy by falsely presenting the issue as one of individual responsibility.

“When we put the onus on individuals to take action to prevent COVID infections and transmission, without providing institutional support, we force people into the trap of blaming each other for a monumental collective problem.”

#AusPol perspectives

In Australia, political leaders from the Coalition parties are employing a similar rhetoric to that of Boris Johnson when announcing changes to COVID policies.

“You’ve got two choices here: You can push through or you can lock down. We are for pushing through,” Morrison recently told reporters.

This week the Prime Minister was criticised for not meeting with a delegation of disability advocates to discuss the impact COVID is having on their lives.

In NSW, Premier Dominic Perrottet has declared he has no regrets about opening the state up over the summer, insisting NSW is tracking well as the Omicron wave begins to subside.

“We can’t hide away, we gotta get through,” he said.

Labor leaders appear to be more willing to acknowledge the unequal impact of the pandemic on people at higher risk of harm.

Opposition Leader Anthony Albanese agreed to meet with disability advocates to discuss their concerns and has called for free and locally manufactured RATS to be made widely available.

Labor’s NDIS Spokesperson, Bill Shorten, criticised the Government’s management of the pandemic for people with a disability.

“There is a pathology of disregard for the lives of people with disability, which no amount of government propaganda can cover up,” he said. 

At the state level, Labor premiers are resisting pressures to follow the lead of the Prime Minister and Coalition leaders in relaxing public health measures.

In Victoria Premier Daniel Andrews has said the masks are “not coming off any time soon”.

And WA Premier Mark McGowan has delayed his state’s planned border re-opening in the wake of Omicron, stating the need for a “safe and cautious approach… to put WA in the best possible position to try to manage COVID-19, safely.”

The Greens have been more proactive than either major party, recently calling for practical measures, such as quarantine payments, to be put into place before opening the borders in WA.

Powerful speech

Last year, Greens Health and Disability Rights spokesperson Senator Jordon Steele-John, warned that many people with disabilities were fearful they will be “left behind to die” as the national focus once again shifted to re-opening the country.

In Federal Parliament, Senator Steele-John, recently gave a powerful speech berating the Morrison Government for its failure to protect people at higher risk from COVID.

“Disabled people in this country will never forgive this feckless Government for their failure to keep our community safe,” he said.

“We will never forgive you, nor will the older Australians, First Nations people, immunocompromised people, for propagating the absolute lie, the total misrepresentation, that our lives are acceptable to be lost in this pandemic – that anybody with an underlying condition can be and should be written off as collateral damage.”

Unfair burden

Many groups in the community have suffered disproportionately from COVID due to existing inequalities and structural barriers to accessing care.

Avoiding further inequities as our public health response changes requires a nuanced understanding of the different impacts that COVID can have on diverse groups in the community.

International evidence demonstrates that children and adults with disability are at increased risk both of contracting COVID-19 and of experiencing serious disea