For some Australians, a packet of COVID-19 antiviral tablets can cost as little as $7, but for long COVID sufferer Julia Robertson it was over $1,000 and meant digging into her savings for a house deposit.
Emerging research suggests taking COVID-19 antivirals while infected could reduce the risk of developing long COVID, but the data is incomplete and there is no definitive evidence that antivirals work to treat or prevent long COVID.
But given antivirals are proven to help the immune system fight the virus, there is discussion among experts as to whether or not it is time to help more Australians access them.
Ms Robertson was 29 when she was first infected with COVID on New Year's Day, 2022.
She considered herself a fit and healthy person. The secondary school teacher would exercise regularly and go on multi-day hikes.
Her initial COVID infection seemed mild. She isolated for the first week and took it easy for the second.
About three weeks after her infection, on a planned holiday to Tasmania with friends, she collapsed while trying to walk a short distance from their accommodation.
"The summer before I'd been in Tasmania, but to do a multi-day hike, walking 25 kilometres a day up mountains and hills," she said.
"For me to not make 700 metres was pretty alarming."
Things got worse.
When she started preparing for the new school term, she found she was exhausted and unable to concentrate.
"I ended up having headaches every day, and all over body pain, aches," she said.
When school went back at the end of January, she lasted three days, then could not go back.
She only went back to work part-time after her sick leave ran out in May.
"Getting long COVID has changed my life in every possible way," she said.
Then in June, she got reinfected.
Given how severely she was impacted by her first COVID infection, she wanted to get access to oral antivirals.
Though she was able to get a prescription for them with relative ease from her doctor, she was told she was not eligible for subsidised access under the Pharmaceutical Benefits Scheme (PBS).
Under current guidelines, the medicines are primarily subsidised for people aged 70 and older, Aboriginal and Torres Strait Islander Australians and those with additional risk factors.
For younger Australian adults to access the subsidised drugs they need to be "moderately to severely immunocompromised", which Ms Robertson was told she was not, despite the disabling impact of her long COVID.
For her, the antivirals would cost $1,100.
She had been putting money aside for a house deposit and said she was lucky to have the savings before she became sick.
"It was not what I wanted to be spending them on, but I chose to," she said.
She took the antivirals and had a relatively mild second COVID infection, testing negative by the fourth day.
Following her second infection, with the help of a good GP, Julia's health slowly began to improve and she is now able to work three days a week.
'I wanted to reduce the risk'
Henry Hamilton Lindsay tested positive to COVID in March, 2022.
He was vaccinated, fit and used to ride his bike every day. His infection confined him to the couch.
He took five weeks off work and said he was barely able to do basic chores, like walk the dog or go to the shops.
Mr Hamilton Lindsay has had enduring fatigue ever since.
"I felt like that I had a pretty extreme and long running reaction to the first time I've had COVID," he said.
He has struggled with other illnesses since the initial infection.
He recently had to cancel his 30th birthday party after being taken out by a common cold.
He has been able to return to his work as a lawyer, but on fewer hours, and still struggles with exercise and concentration.
Ahead of time, he had thought he would try to get antivirals if he was reinfected.
When he tested positive again in November, he organised to get a prescription for antivirals. Again he had no trouble getting one. Like Julia, he was deemed ineligible for the subsidised price and paid $1,100.
"I wanted to reduce the risk that I would end up permanently more disabled," he said.
"I've still been low energy after my latest run with COVID.
"I have no doubt that I would be in a significantly worse position if I hadn't taken the antivirals."
He said he would make the choice again if he had to, but that not everyone could do the same.
"For many people, they simply don't have the ability to pay for what essentially could be life-changing medication for them," he said.
"These people are effectively being left on their own."
No data on long COVID numbers
Just as there is no definitive data on how many Australians are suffering from long COVID, there is no data on how many Australians – long COVID or otherwise – are accessing antiviral medication unsubsidised.
More than half a million Australians have accessed antivirals under the PBS, where they cost about $40 or as little as $7 for a concession.
The Pharmaceutical Society of Australia said while the non-PBS supply of COVID-19 antivirals was occasionally observed by pharmacists, it was not very common.
Mike Toole, an associate principal research fellow at the Burnet Institute, said the current eligibility guidelines were very strict.
"I think that the indications for antivirals should be relaxed," he said.
"Younger people who had a severe initial infection, might be something that could be considered."
He said it was "reasonable" that people who experienced long COVID symptoms might also qualify.
"Something's going wrong with their immune system. And if they get reinfected, their immune response to that reinfection might not be adequate."
Professor Toole said there was evidence that COVID re-infections could have severe health effects.
"Antivirals are proving effective, and if we can expand the eligibility criteria, I think that would have positive outcomes," he said.
A spokesperson for the federal Department of Health said the independent expert Pharmaceutical Benefits Advisory Committee (PBAC) made decisions on PBS listings by considering the efficacy (how well the medicine works) and cost-effectiveness (value for money) of a drug.
"[The PBAC] continues to monitor the eligibility criteria for PBS access to [COVID-19 antivirals] Lagevrio and Paxlovid and may recommend changes to the eligibility criteria as needed, considering new evidence for their effectiveness and safety in other patient groups, as well as the evolving epidemiology of COVID-19," the spokesperson said.
The two drugs are currently not approved for treating long COVID, the spokesperson said.
"The PBAC has not received any requests to consider changing the restrictions for COVID-19 antivirals to make these medicines eligible for people with 'long COVID' who are reinfected with COVID-19 and are not eligible under the existing restrictions," they said.
Submissions to PBAC can be made by drug sponsors (individuals or companies who export, import or manufacture goods for supply in Australia or elsewhere), medical bodies, health professionals and individuals.
Experts say more research needed
Ziyad Al-Aly is a clinical epidemiologist at Washington University in St Louis.
He is the lead author of a pre-print study, not yet peer-reviewed, which found there was a 26 per cent reduction in the risk of long COVID in those who took the antiviral Paxlovid during their acute infection.
It did not matter if the individuals were unvaccinated, vaccinated, boosted, having an initial infection or a reinfection – their risk of long COVID was reduced by taking antivirals.
It is the first study to examine long COVID following antiviral treatment in the acute phase, examining a cohort of more than 56,000 US veterans, who are likely to be older, male and have underlying health conditions.
The antiviral Paxlovid is only available to Americans who are older than 60 years of age or have a medical condition that put them at a higher risk of severe COVID-19, so the findings may not apply to younger, healthier demographics.
Dr Al-Aly said it was "plausible" people who have long COVID from an initial infection, including younger people, would benefit from antivirals for reinfection.
"There is no long COVID without COVID," he said.
"We're not saying these antivirals are perfect … but targeting the virus early on, reducing that viral replication is a good strategy to reduce the risk of long COVID later on.
"But I think if we are contemplating broadening the indication of antiviral use to include younger individuals, I think that would necessitate further research … to help us understand whether the benefit in this population truly outweighs the risk."
He said there was a risk of antiviral resistance, where the medications could become less effective against the virus for people who really need them to prevent severe infections.
But he also said long COVID was a national crisis, and that the bulk of research tended to focus on older and sicker demographics.
"This is a significant knowledge gap that needs to be addressed in clinical trials," he said.
There is a double-blind clinical trial underway at Stanford Medicine examining whether Paxlovid may help reduce symptoms of long COVID generally, not just in the context of a reinfection — its results are not due until November 2023.
Professor James McCarthy, director of the Victorian Infectious Diseases service at the Royal Melbourne Hospital agreed more research was needed in this space.
"I wish we had good treatments for long COVID … but it's very clear that we don't," he said.
When asked whether antiviral drugs should be made available to long COVID sufferers in the case of a reinfection, he had a warning.
"We really have no trial information that show that the drugs work in that situation," he said.
"We cannot forget, with hydroxychloroquine and ivermectin, only when we did control trials, did we realise the drugs didn't work at all," he said.
