Megan Fraser was fully vaccinated against COVID-19 when she was infected with the virus but, six months later, her life continues to be severely affected.
"I have gone from being a single working Mum who worked almost full time ... I did regular and high intensity exercise classes, and now I can only work a few hours a day, [and] cook a meal... And that's really all I have the energy for now," Ms Fraser said.
Ms Fraser, a teacher, didn't catch COVID-19 at work, so she can't apply for worker's compensation. She doesn't know if she's eligible for income protection insurance payments through her superannuation policy.
But the 43-year-old's ongoing symptoms have meant she's had to reduce her hours of work and use almost all of her leave entitlements.
"I am the sole income in my family, so if I don't work, we essentially have no income," she said.
"If I did work full time, that would mean I wouldn't be able to look after my children.
"It's a choice between having an income, or having a clean house or being able to take my kids to do something.
"And I have no answers as to whether that's going to improve or anytime soon."
Looming health and economic burden
Last week, the federal health minister Mark Butler issued a grim warning that millions of Australians could be infected by COVID-19 by the end of winter.
Australia does not collect data on long COVID but a New South Wales study last year found 5 per cent of people who got COVID-19 during New South Wales' first wave in 2020 were still experiencing symptoms three months later.
Other estimates are that around 10 to 20 per cent of those who had had COVID may experience a post-COVID condition of some kind.
The number of Australians who will be left with a serious disability as a result of long COVID is expected to rise to significant levels in the next few months, according to the Actuaries Institute.
Actuaries are professional statisticians who calculate the risk of something happening, often for the insurance industry.
The institute estimates that if the current rate of daily cases of around 30,000 continue in Australia, up to 100,000 people could be suffering severe long COVID (someone whose daily activities are affected a lot, and considered a serious disability) within the next three months.
Another 300,000 people could have some limitations on their daily activity.
"What we've effectively done is added another form of disability into the community," Jennifer Lang, from the Actuaries Institute COVID-19 working group said.
The Actuaries Institute's modelling is based on the UK's monthly survey data, in which around 3 per cent of the total population had self-reported long COVID symptoms more than four weeks after a COVID-19 infection.
"In the UK, 1-in-200 people now have serious limitations on daily activity from the long-term aftermath of a COVID-19 infection, and another 1-in-80 people have some limitations on daily activity," Ms Lang said.
Ms Lang said the total reported cases per population in Australia is almost as many as the UK now – 33 per 100 population in Australia, compared to 34 per cent in the UK.
She said, in Australia, the proportion of people who get long COVID was likely to be lower at around 1.5 per cent of the total population, because most of the population was vaccinated before getting COVID-19.
The Actuaries Institute's modelling is based on the assumption that being fully vaccinated halves your chances of long COVID.
Other studies have found full vaccination only reduces your chances of getting long COVID by 15 per cent.
Actuaries model risk for the insurance and superannuation industry, and Ms Lang expects disability-related insurance claims for income protection, workers' compensation and total and permanent disability (TPD), to rise as a result of long COVID.
However, she said it was too early to say by how many and at what financial cost.
"When you have more claims, you generally need higher premiums so that the insurance companies can still pay those claims," Ms Lang said.
Income protection an option
Nick Kirwan, from the Financial Services Council, said there wasn't any available data on the number of long COVID-related insurance claims in Australia.
"The main type of insurance that will be relevant would be income protection, but total permanent disability might also be relevant in time," Mr Kirwan said.
"And if they can show that that's the case, then they should be able to make a claim."
Mr Kirwan said total and permanent disability insurance would be almost be impossible to claim at the moment because not enough is known about long COVID.
"Who knows with long COVID, it's only been around for a year or two. Will it last for five years? 10 years? Who knows at the moment?"
Mr Kirwan urged people to check what insurance types they have.
"It's a good idea to ask your superannuation fund about what you've got in super, or your life insurer about what you're covered for."
Belinda Dendle got COVID-19 in February and has been unable to work since.
The 51-year-old school teacher has used all of leave entitlements, but was able to make a successful claim for income protection insurance as part of her superannuation policy which covers part of her previously full-time salary for up to two years.
"I keep saying to the doctor, I can't afford to stay off work."
She was due to return to work this term but has been forced to delay her return to work again.
"The conversation I've just had again with him [her doctor] this week was, 'I can't do what I thought I could this month'," she said.
Income support needed
The Actuaries Institute said Australia would need to look into income support for those who can't work or have reduced ability to work because of long COVID-19.
Ms Lang said support in the workplace, so that affected employees can continue to work while still suffering from symptoms, would also be needed.
"If we have more disabled people in the community, we need to make sure that we're trying to support them as well as we can."
ACTU assistant secretary Liam O'Brien agrees.
"We know that this is going to have a long term effect, not just on workforce availability, but on people's health," he warned.
"We need to think about the suitable supports that we've got both in workplaces to make sure that we can accommodate people who might not be able to work at their full capacity, or indeed not able to work at all, right through to what supports there are going to be in the community to make sure that people don't fall through the cracks.
"The reality is that people get allocated 10 days of sick leave per year. And, as we know, with long COVID, we're talking about people being ill for months, if not even longer, it's very early days when it comes to this virus.
Mr O'Brien said workers' compensation claims were also not as high as the union would expect, and that is because employees were struggling to prove they caught COVID-19 at work.
"When you see such widespread community transmission, being able to pinpoint your exposure back to your workplace is very difficult, even for workers who are clearly being exposed to COVID."
State and territory work cover agencies aren't collecting data on claims specifically related to long COVID-19.
However, of those agencies that could respond to the ABC's questions about COVID-related workers' compensation claims numbers were considered low.
Queensland has accepted a total number of 75 compensation claims since the pandemic began with a confirmed COVID-19 diagnosis.
In the Northern Territory, 13 of these claims by people who got COVID-19 at work were accepted by the insurer last financial year.
Two of these claims had lost time greater than four weeks.
In Western Australia, there were 60 claims made for a positive diagnosis of COVID-19 contracted through work in the 12 months to July this year.
Skye Collin, workplace lawyer at Gordon Legal, said it would become increasingly challenging for people to prove they got COVID-19 at work.
"But it can be overcome, and I've seen it overcome and claims have been accepted here in Victoria and nationally," Ms Colin said.
"If they're unsure whether they have contracted COVID In the course of employment, then I would strongly suggest seeking some legal advice, speaking to the union."
Ms Collin said employers also needed to provide a safe workplace.
"As an employer you could certainly open yourself up to a greater risk of liability if you are encouraging your staff to return to work."
She said, even without a public order in place mandating working from home, bosses still left themselves open to being sued if a staff member could prove they got COVID-19 at work.
"I believe it certainly would be [possible]."
Peter Byrne from AiGroup said employers the organisation represented were aware of the risks.
“I think employers are very much active in trying to reduce the risks that they face, both for the welfare of their workers and for their own liabilities.”
Falling through the cracks
Jessica Mercer did not have income protection insurance when she caught COVID-19 and, because she also didn't catch the virus at work, she can't claim worker's compensation.
The 36-year-old used to work full-time, but can now only work part-time, resulting in a 40 per cent cut to her income.
“It’s flipped my life upside down. I feel like a bit of a shell of myself. It's changed my working habits, my social habits, my everyday life,” she lamented.
“What I can and can't do is very, very different to what I could do pre-COVID, it's been quite debilitating.
“I attempted to return to work full time and very quickly the body was telling me nope, that's not possible.
Ms Mercer has used all of her sick leave.
She is trying to reduce her mortgage repayments and stagger her medical appointments.
“For example, to attend an initial cardiologist appointment I think it was nearly $354," she recalled.
“Getting a little bit back from Medicare but certainly massively out of pocket for that one.
“There's been certain blood tests that are not covered by Medicare. So that ranging between $70 up to $100.”
Because Ms Mercer already has long COVID-19 she can't apply for a new income protection policy because it would be considered a pre-existing condition.
“They [her superannuation company] passed me on to the insurer and when I attempted to discuss my situation with them … I don't even think I used the term long COVID, I think they did. There was a very quick short blanket, no,” she recalled.
“Straightaway, there's no way that we're going to insure you for that."
However, the Financial Services Council said someone whose COVID-19 symptoms did completely disappear should be able to be covered by a new income protection policy if they are later re-infected.
Ms Mercer argues long COVID-19 needs to be recognised as a disability.
“So the government needs to step up here.”
