A national COVID database, more purpose-built long COVID clinics in hospitals and GP education programs are needed to improve treatment for people suffering long-term impacts of the coronavirus, some of whom face year-long waits for specific services or are denied diagnoses.
A parliamentary report into long COVID in Australia, published on Monday, has estimated between 2 and 20 per cent of people infected with COVID are developing a lingering condition more than three years after the first virus cases were detected in Australia.
But there is no concrete data on how many Australians are affected by long COVID nor the most effective way to treat it – leading the parliamentary committee to call for a unified national approach to research, data collection, definitions and guidelines.
“There are lots of things about COVID and long COVID we do not understand,” said Labor MP and paediatrician Mike Freelander, who chaired the committee.
“We were reporting the figures, but we’re not analysing the figures, and we’re not collecting them all together in a national program. That’s what we need … COVID is not going away, and we must get research into the actual effects of this virus, which are actually fascinating.”
The report said a future Australian Centre of Disease Control – which Labor promised before the election – should administer a single COVID database and lead a nationally co-ordinated research program.
It also highlighted confusion around what constituted long COVID, with states and territories adopting different definitions.
The committee said all jurisdictions should in the short term adopt the World Health Organisation’s definition, which describes long COVID as the continuation or development of new symptoms three months after the initial infection, with those symptoms having lasted at least two months without another explanation.
Freelander said the lack of understanding around long COVID – which has up to 200 symptoms – meant people were struggling to get a diagnosis.
“There’s a bit of scepticism about – is this real or not? I can assure people this is real,” he said. “It is having a real effect on people. And in particular, it’s having a big effect on, [I believe], productivity and the economy.”
While the exact level of absenteeism caused by long COVID is not known, new analysis by Impact Economics and Policy, based on an estimate of 40,000 people being unable to work due to the illness, puts the weekly cost to gross domestic product at $110 million.
Liberal MP Melissa McIntosh, the committee’s deputy chair, said she personally experienced a mild case of long COVID last year, with breathlessness and fatigue. “I found there was a lack of information out there when it came to understanding what I was experiencing,” she said.
“What we uncovered was that there is a diagnosis, data and treatment gulf when it comes to long COVID in this country.”
McIntosh said the inquiry, which received almost 600 submissions, heard there were huge inconsistencies in how people were treated and diagnosed, including in long COVID clinics, with some receiving great multidisciplinary care but others facing year-long waitlists and going untreated.
There were also disparities in treatment depending on where people lived and their socioeconomic status.
McIntosh said a consistent definition, education program for GPs and boosted funding for multidisciplinary long COVID clinics in state hospitals – which also needed to reach people in the regions – were important short-term measures to ensure people received the best level of care.
Other recommendations include an improved COVID vaccine strategy, regular review of who is eligible for antiviral medication, and an advisory body including ventilation experts and architects to develop indoor air quality standards.
Telehealth resources should be leveraged to make accessing care easier for people, and mental health support for people with long COVID should be prioritised.
Although it was outside the report’s scope, the committee also called for an Australian summit into the country’s pandemic response.
Health Minister Mark Butler said the Health Department had been asked to develop a national plan for long COVID and take the committee’s findings into consideration.
The government will also give $50 million to the medical research future fund for long COVID research, with grants opening in August.
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