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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 disease or death.

Even after vaccination, many people in these groups remain at higher risk. One study found that the risk of death from COVID-19 was significantly higher among vaccinated people with Down Syndrome than among vaccinated people without Down Syndrome. Vaccinated people with neurological conditions were also more likely to die from COVID than the general vaccinated population.

The increased risk experienced by groups such as Aboriginal and Torres Strait Islander people can be due to physiological factors, such as suppressed immunity, issues such as group living and/or social determinants, such as poverty, insecure housing and poorer access to healthcare.

Increased risks can also be due to the different communication needs of some groups not being met through the media or government messaging.

It is difficult to generalise about the impact of public health policy changes on these diverse groups of people but a common thread running through their experiences is a sense of marginalisation from public and community life.

This was articulated last year by Professor Gemma Carey, a public health and disability researcher and advocate. “As we see federal and state governments talk about ‘opening up through vaccine passports’ and ‘living with Delta’, our lives don’t open up. They get smaller,” she wrote in The Canberra Times.

“The more those who are vaccinated ‘live with COVID’ in the community, the more people left out of the vaccination program – by poor policy or by poor circumstance – are pushed out of the community.”

Aboriginal and Torres Strait Islander communities

Aboriginal and Torres Strait Islander people are at risk from changes to COVID policies due to a range of factors, including poorer (on average) underlying health status and structural barriers to accessing care, reflecting the ongoing impacts of colonisation.

Croakey reported last week on the failure of both federal and state governments to respond to repeated calls from help from Indigenous communities.

Unfortunately since that time, the situation has worsened with reports yesterday of 1,096 new cases across the general Northern Territory population and 156 people hospitalised.

Source: https://coronavirus.nt.gov.au/current-status

Previous reports have documented the disproportionate impact the pandemic is having on Aboriginal and Torres Strait Islander people with data showing that nine out of 10 COVID patients in hospital in the NT are Indigenous.

The rise in infections has led the Australian Medical Association’s Northern Territory branch, supported by the Australian Nursing and Midwives Federation NT Branch, to call for a “Code Brown” alert for every public hospital in the Territory, to relieve the pressures on exhausted health workers and prevent industrial action. This is the highest-level emergency response that can be declared in an Australian public hospital.

Concerns have also been raised by the head of the Central Australian Aboriginal Congress, Donna Ah Chee, about some COVID-related deaths among Indigenous people not being reported.

The Aboriginal Medical Services Alliance Northern Territory (AMSANT) has suggested the NT Government could be in breach of its Closing the Gap commitments due to its failure to prevent the spread of COVID in Indigenous communities.

AMSANT stated that according to clause 64b of the National Partnership on Closing the Gap, the NT Government agreed to ensure “emergencies such as natural disasters and pandemics” would not “disproportionately affect Aboriginal and Torres Strait Islander people”.

Michael Gunner has denied that his Government is in breach of the agreement, and claimed that Indigenous groups are “catastrophising” the situation – despite admitting in a radio interview that COVID “is impacting Aboriginal more than non-Aboriginal [people]”.

AMSANT chief executive officer John Paterson, who himself has COVID, has called on the Government to ensure people have a safe environment at home in which to recover. He said:

… I feel sorry for our mob who aren’t triple vaxxed and trying to isolate in overcrowded, hot homes sometimes without any more than a mattress on the floor.

This virus needs people to rest so they can recover quickly. They can’t do that in unsafe, hot, overcrowded homes.

If the government is determined for people to do ‘COVID at home’, they need to make sure they have a safe environment to do that – we all know right now, many families in the bush don’t.”

Media framing

Some commentators and advocates are critiquing media coverage for normalising the impact of COVID and minimising the costs to at-risk groups of relaxing public health measures.

Some media outlets in Australia have highlighted the concerns for at risk groups (see here, here and here for some examples).

But many reports focus on the impact of relaxed restrictions on industries such as tourism and retail, without mentioning the potential implications for people at higher risk.

Professor Steven W. Thrasher, a journalism academic at Northwestern University, has written a book on the disproportionate effect that viruses have on marginalised people.

Writing in Scientific American, Thrasher argues that the news media is helping to shape public opinion in order for business to return to “normal”, at least partly motivated by the need for media outlets to benefit from support from business advertising. Part of this is persuading the public that so many deaths are inevitable.

He writes that the current environment has created a ‘viral underclass’, which is being ignored by the media due to their reliance on advertising from businesses that expect to benefit from the removal of public health measures.

Thrasher argues that this has influenced the media to focus on the benefits of “moving on and returning to normal” rather than on the need to address the systemic issues exacerbating the impact of COVID and other diseases (rampant incarceration, eviction, homelessness, lack of health care, poor ventilation and economic inequality) or government action to reduce transmission.

Economic impacts of poor public health responses

Responses to COVID-19 are often framed as a trade-off between public health and the economy. But the experience of Hannah (a pseudonym) says something different.

After the initial lockdown, Hannah’s employer put pressure on staff to come back to the office, regardless of their health status.

For Hannah this meant taking several buses a day and working in an open plan office with poor ventilation and no ability to open windows.

Despite having an underlying risk factors for COVID-19 and exceeding her KPIs while in lockdown, Hannah received no support from her workplace for continuing to work from home.

Hannah undertook her own research on the transmission of COVID and provided extensive information to management about the risks posed by an airborne virus in a closed office environment with no ability to open windows.

Her requests for evidence-based measures, such as improved ventilation and CO2 monitoring, were ignored and Hannah was told the building owner didn’t want to make changes to the building to improve ventilation.

After multiple attempts to provide her employer with research into the risks of COVID-19 and strategies needed to reduce the risk of transmission in the workplace, Hannah felt that she had no option but to resign.

“I’ve been told by managers at work that I’m ‘obsessed’ and that I don’t know what I’m talking about,” Hannah told Croakey.

“It is unacceptable that my employer did not appear to be aware of even basic scientific research on COVID and was not aware of the safe work guidelines.”

Like many people at increased risk, Hannah is extremely concerned about the current move towards relaxing public health measures.

“I couldn’t believe it when (NSW Premier) Dominic Perrottet said that ‘masks are an impediment’. This is blatantly false – the only thing we need an impediment to is a disease!

“I’m very worried about what will happen when the mask mandate is removed at end of February. I already barely go anywhere and will even more unsafe out in the community once the current restrictions are relaxed.

“People are talking about post-COVID but it’s not going anywhere. I’m really concerned that the [NSW] Government is assuming that if we ignore COVID, it will go away – but this is not how diseases operate. I’ve lost any trust in government on this issue and feel like, ‘If the Premier can’t even tell the truth about masks, how can I trust him to keep me safe?’”

Taking action

The concerns of people like Hannah and Glen Ramos are addressed by OzSAGE, a multi-disciplinary network of Australian experts from a broad range of relevant sectors.

OzSAGE has released an advice document that outlines a multi-pronged strategy to reduce the risk of COVID-19 for people with disability, addressing individual factors, structural disadvantage, and systemic issues, discrimination and prejudice.

This document includes recommendations to co-design prevention and control strategies, higher vaccination coverage targets for people with disability, vaccination of all disability workers, strategies to reduce transmission risk including safe indoor air and mask use, prioritisation of third doses for people with disability, better support for COVID-19 patients with disability, ensuring people with disability are not deprioritised in access to health care, and improved data quality and reporting.

One important strategy recommended by OzSAGE is to increase the use of higher grade masks, such as P2/N95 respirators, around people at increased risk from COVID.

Professor Anne Kavanagh, Chair of Disability and Health at the Melbourne School of Population and Global Health, has stressed the need for respirators to be mandated for carers of people with disabilities:

“With such high levels of community transmission people with disability, many who have other co-morbidities and receive support from multiple workers, are at significant risk yet respirators are only recommended for workers when they are supporting someone who is COVID-19 positive or a close contact themselves. While the Omicron is widely circulating, respirators should be mandated at all times when workers are supporting people with disability.”

Future scenarios?

A recent UK Government document has mapped out four potential scenarios for the development of COVID.

Two of these scenarios involve the emergence of new variants of concern, anti-viral resistance and immune escape, with significant population health impacts,  particularly on those with underlying health conditions and/or low immunity.

Given this uncertain future we need to start planning now to avoid deepening existing inequalities if some of the worst case scenarios eventuate.

We also need to plan for the impact of long COVID, with emerging research indicating the substantial impact this can have on the health system, even for people who were not hospitalised with the disease.

Ramos has thought about how governments could improve their decision making in the future to take account of the unequal impact future pandemic scenarios will have on different population groups.

He advocates for a flexible and transparent public health response where measures are pegged to relevant factors – such as case numbers, outbreak clusters, or regionalised spread – and which takes the politics out of decision making.

With the impact of long COVID still unclear, Ramos says governments are ignoring the public health benefits of reducing the risk of infection for all, not just those at higher risk.

“The ‘let it rip’ strategy risks creating a new population of immunocompromised people with an underlying co-morbidity for future pandemics,” he warns.

“Politicians seem to believe that if you wish COVID away, it will go away – but this is fantasy land. They don’t realise that we need to reduce the spread of the virus now to reduce the negative health and economic impacts of COVID in the future.”

Editor’s note: This article was corrected on 17 February, to remove a quote that Croakey wrongly attributed to Donna Ah Chee. The ABC report where she is quoted can be read here.


See Croakey’s archive of stories on health inequalities.

 

 

 

 

 

 

 

 

 

 

 

 

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