Lifelong lockdown: what it means to live with COVID-19 for immunocompromised people

It was, the wife and mother of two said, something she thought would enable her to regain a semblance of control over her life, or at least fracture her yawning disbelief at the diagnosis of leukaemia delivered to her just some hours earlier.

"I got my diagnosis on Friday - it was Valentine's Day," Jenkin said. "When I went into hospital on the Sunday, I was told my hair would fall out and that they couldn't guarantee I would ever get home.

"It was a huge shock to think, 'oh my goodness....", she added, as her voice trailed off.

Just as Jenkin and her family trekked into that harshest and most unforgiving of all realities - the unknown - the world outside was on the precipice of occupying an analogous space.

Once distant rumours of a novel pathogen in Wuhan, China, were slowly beginning to mutate into something far more tangible, something to collectively be feared.

Two years on, Jenkin, 54, of Ballarat in Victoria's Central Highlands, is in remission and the pandemic continues to rage. But much of the developed world, which no longer lacks the armour of vaccination, has since migrated from the established precautionary principles that once guided their response to the threat posed by the virus.

One by one, policies which reduce the risk of transmission are being dismantled as government, after unleashing the virus on the community, willingly surrenders to growing calls to return to our pre-pandemic way of life.

The overriding problem with this approach, however, is that it wrongly assumes the risk calculus for doing so varies little between person to person. If, on the other hand, those gradations of vulnerability within our community have been taken into account, then it's a policy position which implicitly, and dangerously, assigns a lower value to the lives of a sizeable proportion of the population.

"I don't like it when anyone says, 'oh well, we're all going to get COVID at some stage'," Jenkin told me in one of the rarer moments in which she expressly spoke to the reality of her vulnerability.

"It really doesn't sit well with me because I can't afford to get it. If I do, I will fight like hell but I know it could literally kill me.

"But I know people are just doing what's right for them, just thinking of themselves, so I've learned not to take it personally. I don't want to be selfish."

The idea that society should accommodate Jenkin's very real vulnerabilities was obviously something which jarred with her worldview and sense of purpose; it made her uncomfortable. Nursing, it should be noted, was never just a vocation to Jenkin; it was, she told me, a calling.

Yet, the reality is close to half a million adults in Australia, like Jenkin, live with weakened immune systems due to disease or immunosuppressant treatment, meaning COVID-19 tends to be more deadly to them. Millions more again suffer from other diseases and genetic disorders that impede immunity.

And while COVID-19 vaccines have been deemed safe for most of these people, it has become increasingly clear the protection offered by vaccination is materially blunted in much of this population, particularly those with blood cancer.

Three jabs in people with blood cancer, for instance, produces little or no antibody response. So, though Jenkin is triple vaccinated, she's conscious her protection against infection relative to the general population remains markedly lower, if not non-existent.

Consequently, Jenkin, like many thousands of others, has found herself returned and exiled to that forbidding territory of the unknown, forcing her to retreat into a self-imposed lockdown, unable to participate in the fullness of life.

Where the rest of society moves on, the virus - like the sword of Damocles - continues to hang over the heads of those with weakened immune systems.

"You're continually reassessing [risk] without even being conscious of it - I've missed out on so much," she told me, pointing out cancelled birthdays and celebrations with family, as well as the painful rarity with which she sees her parents and closest friends.

"Of course, everyone has [suffered] through the pandemic," she quickly added, reminding me she's never been one who likes "to make a fuss" of herself.

Chris Tanti, chief executive of the Leukaemia Foundation, said many immunocompromised people, within the blood cancer community at least, were finding it increasingly difficult to cope with the sense of exhaustion and grief that attaches to their ensuing "loss of hope".

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"Because of the risks associated with getting [COVID-19], people are not seeing their usual circle of friends or going into public places, they're not socialising with their families and so they're feeling increasingly isolated and scared," Mr Tanti said.

"They're doing everything they can to stay alive - they're trying to live for their families and their kids."

In Mr Tanti's view, it should be possible to carve out an existence for immunocompromised people which borders on normality, notwithstanding the pandemic. Vaccination, mask mandates and investment in ventilation infrastructure in hospitality venues and workplaces were, he said, among the most obvious measures government should either maintain or invest in to protect the community.

"You have a responsibility as a human being to everybody else in the community to be as safe as you possibly can," Mr Tanti said.

"As a community, we need to do whatever it is we can to keep people safe so we can all return to life as we used to know it as best as we can."

They're views shared by Burnet Institute epidemiologist Mike Toole, who said government should be slow to remove basic restrictions, particularly given our high rates of prolonged community transmission.

"Abandoning too many restrictions, especially masks, social distancing, testing, is short-sighted," Professor Toole said. "The claims that all is now under control, that cases and hospitalisations are declining, aren't particularly accurate, and deaths are certainly not declining."

For those unmoved by the moral or ethical rationale for investing in a COVID-proof future, Professor Toole said there were some self-serving reasons to do so regardless.

Immunocompromised people, he said, tend to harbour the virus for much longer periods of time, giving the virus far greater opportunity to evolve and develop mutations, and thereby give rise to new variants which may or may not be fitter than their predecessors.

Indeed, the weight of scientific opinion has traced the origins of both Alpha and Omicron to the blood samples of immunocompromised people.

"Our primary concern of course is that infection in immunocompromised people places them at high risk of severe disease, but they are also potentially a risk to the community [if infected]," Professor Toole said.

"There are also different degrees and forms of immunocompromised," he said, adding that it was not uncommon for a person's immune system to decline with age.

Viewed from that perspective, the idea the world comprises two categories of people - those who are immunocompromised and those who are not - approximates to a false divide. The better view is that there's the immunocompromised, and the rest, who will likely become immunocompromised over time.

It follows that measures which deliberately accommodate the needs of immunocompromised might best be viewed as an investment in a world that benefits each and every one of us, not just a seemingly small minority.

In any event, Professor Toole said there's nothing to suggest the pandemic was even close to ending.

"Given current global vaccination rates, the virus is going to circulate for some time and therefore the risk of another variant arising is very high," he said.

"And we have no idea whether it will be more infectious or more severe, we just don't know, which is why we must prepare."

Part of that preparation, he said, is regaining that sense of collective wellbeing the community so admirably shouldered in the early days of the pandemic.

The gloomy alternative is that we gradually become acquainted with every letter in the Greek alphabet while unnecessarily forfeiting the lives of so many people.