Over the past year, Daniel* has calculated he has racked up more than $100,000 in bills from hospital visits, medical tests, specialist appointments and medication — .
The 25-year-old takes up to 20 tablets a day, regularly feels fatigued, struggles with cognition and focus, and often experiences chest pain and fluctuating blood pressure.
While he says he is “privileged” that many of his costs have been covered by Medicare, he is also spending hundreds of dollars each month on off-label medication, and the illness has cost him his entire income.
“I’m on Jobseeker now, which is an unsuitable payment for the scenario I’m in,” he said.
“My outgoings are much more than my incomings.”
For a single person with no dependents, the maximum fortnightly JobSeeker payment is $749.20.
Daniel previously worked in the music industry, a job which often involved long days, late nights, and attending events. While he was not on a fixed salary in his work, he said he was paid significantly more than he is now.
Since contracting COVID-19, he has not been able to work at all, and often struggles to leave his Sydney home.
Daniel has also been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a condition that causes a racing heart, dizziness and fatigue when standing up. It appears to have a correlation with Long COVID.
“I might have one or two good days where I gaslight myself into thinking that I could go back to work and I’ll be looking at a job or whatnot — and then the next day I’ll be completely bedridden again,” he said.
‘Massive gap’ in financial support
Daniel is living with his mother, with the two of them barely making ends meet. Without his mother’s support, Daniel believes he would be “out on the street”.
He says one of the hardest aspects is the lack of access to the(NDIS) and Disability Support Pension (DSP).
“In terms of financial support, there really is a massive gap at the moment. I think there needs to be some kind of temporary sickness allowance and living support as well,” he said.
“If you don’t fit into a box where you’re eligible for the NDIS, you’re sort of left to fend on your own.”
What government support is available for people with Long COVID?
In February, the to the House Standing Committee on Health, Aged Care and Sport Report’s Long COVID Inquiry and supported a series of recommendations.
These included establishing a single COVID-19 database; developing evidence-based guidelines for diagnosis and treatment; longer-term nationally coordinated funding; and a review of the Medicare Benefits Schedule (MBS) and items for treatment of chronic conditions.
It noted several other recommendations including educating healthcare providers on diagnosing and treating Long COVID, and funding outreach clinics for rural and regional areas.
In April 2023, the government committed an extra $50 million of funding into Long Covid research.
The Department of Health and Aged Care has also developed a national plan to provide a framework for the health response to Long COVID.
Australians with Long COVID are also able to access several services subsidised by Medicare, including GP consultations and support through chronic disease management plans and mental health services.
But the Australia Long COVID Community Group, and Long COVID Support Australia, said these services — and the government’s response to the inquiry — fall short of the support needed.
“There is zero mention of financial support for Long COVID sufferers who are unable to work and do not qualify for existing supports,” they said in a statement.
“This leaves them in a state of vulnerability, struggling to make ends meet while contending with the debilitating effects of Long COVID during a cost-of-living crisis.”
While many Long COVID patients are on JobSeeker with medical exemptions, a person with Long COVID may meet the eligibility requirements for the DSP depending on their specific circumstances.
Eligibility requires the patient to have a condition “likely to persist for more than two years”; be “diagnosed, reasonably treated and stabilised”; have an impairment rating of 20 points or more; meet the program of support rules if applicable; and be unable to work at least 15 hours a week in the next two years.
This leaves them in a state of vulnerability, struggling to make ends meet while contending with the debilitating effects of Long COVID during a cost-of-living crisis.
Australia Long COVID Community Group, and Long COVID Support Australia
But Daniel said many Long COVID sufferers are not able to meet these requirements.
“It’s left a lot of us in this limbo-type scenario where we aren’t well enough to work but aren’t deemed eligible for any of those kinds of supports,” he said.
‘Stuck at a dead end’
Brett Berry, 46, is facing the prospect of losing his home in Adelaide because of Long COVID.
He caught the virus on the way home from a holiday in July 2022, during what he describes as the happiest time of his life.
He had recently started a “dream job” in the building industry, was in the process of buying a home, and enjoyed an active social life.
Adelaide man Brett Berry had to leave his job due to Long COVID, and has struggled with his finances ever since. Source: Supplied / Brett Berry
Now, his constant headaches, dizziness, muscle fatigue and aches, and cognitive impairments, have left him unable to work.
He has spent $20,000 of his savings trying to stay afloat but has now defaulted on his home loan.
“I’m very good with finances and I’m definitely not wasteful, but at this stage … without (paying for) any bills, food, or recreation, I am already out of money,” he said.
“I’m really stuck at a dead end … I don’t want to lose this house, I’ve got nowhere else to go.”
Brett has been able to access some income protection support and JobSeeker with a medical exemption, but his living expenses cost more than the amount he receives.
He is also paying for regular doctors’ appointments, six prescription medications and two off-prescription supplements, and needs other treatments but cannot afford them.
I’m really stuck at a dead end … I don’t want to lose this house, I’ve got nowhere else to go.
Brett Berry
He is not eligible for the DSP but is now trying to access his superannuation early in an attempt to stop his home being foreclosed.
“I know some of the Long COVID Inquiry recommendations were around air quality and how we manage things in the future, but there wasn’t really anything about how we help the individual,”he said.
“There are a lot of people that are very sick that are going through a lot of financial hardship, but there’s no support.”
He said the wording around eligibility for the DSP should be changed to be more inclusive of people with Long COVID.
“We’re not job seekers — I had a great job, I would’ve loved to go back to work,” he said.
“We are medically disabled, we should be under the Disability Support Pension.”
*Full name has been omitted for privacy
