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Do more, do better: experts respond to the Australian Government’s plans on long COVID

After a long wait for the Federal Government’s release of its plans on long COVID, the resounding view from experts surveyed by Croakey is that more work is needed. This is the first of two articles.


Alison Barrett writes:

The Federal Government’s long-awaited response to the inquiry into long COVID and repeated COVID infections must do better at addressing the needs of Aboriginal and Torres Strait Islander people and communities, according to experts surveyed by Croakey.

The Government has been urged to embed cultural governance and First Nations leadership in each of the outcomes in its National Post-Acute Sequelae of COVID-19 Plan.

Kristy Crooks, member of the APPRISE Executive and Co-Chair of the FIrst Nations Pandemic Research PreparednesS NeTwork (FIRST) Governance Group, said: “It is essential to state the intent to include First Nations peoples in co-designing recommendations and actions. This is not evident in the current document.”

Crooks also stressed the importance of stepping up prevention efforts. “Everyone has a responsibility to keep COVID and long COVID on the agenda – the pandemic is not over, and the impacts will be ongoing for a long time,” she told Croakey. “Prevention is a key strategy in reducing future morbidity and mortality. Now is not the time to lose focus.”

The Aboriginal Medical Services Alliance Northern Territory (AMSANT) called on the Government to do a better job of promoting the importance of prevention of COVID and long COVID, especially among Aboriginal communities.

A well-developed education and communication strategy should inform people that COVID-19 causes both long COVID and also increases the risk of a range of serious illnesses such as heart disease, diabetes and dementia, AMSANT said.

“The Government has done very little to inform the public of these risks which are quite substantial. Nor has the fact that vaccination protects against long COVID been well publicised.”

Professor Linda Slack-Smith, a social epidemiologist at University of Western Australia, also said she would have “liked to have seen more focus on COVID-19 prevention” in the National Post-Acute Sequelae of COVID-19 Plan.

Croakey’s survey of nine experts and relevant organisations also included consumer health experts, who called for more support to be urgently provided to those living with long COVID, and for greater involvement of people living with long COVID and their carers in national policy responses.

“When we have spoken to people living with long COVID, what they are telling us is that they feel like they have been forgotten by the system and the wider community,” said Consumers Health Forum CEO Dr Elizabeth Deveny.

Paige Preston at the Lung Foundation Australia told Croakey that a 2022 community survey found that “long COVID can cause significant impacts to the daily life of individuals”.

“More needs to be done now to support those living with long COVID,” Preston said.

Implementation gaps

While most of those surveyed welcomed the Government’s acknowledgement of the seriousness of long COVID, by way of the National PASC Plan, several raised concerns about a lack of detail on how the strategies in the Plan would be supported and sustained.

“Personally, I would have liked to have seen a lot more concrete, substantive actions with specific deadlines and committed funds,” said public health policy consultant Glen Ramos, who is researching pandemic management. He described the Government’s response as a “nothing-burger”.

In an article in Pearls & Irritations titled, ‘Government’s response to Long Covid inquiry an exercise in sophistry’, health policy analyst and Croakey columnist Charles Maskell-Knight wrote that: “…given it took longer to prepare the response to the report than it took to carry out the inquiry leading to the report, one would expect a clear account of the actions the Government was taking. One would be disappointed”.

The long COVID inquiry made nine recommendations plus sub-recommendations. The Government noted two and accepted seven in full or in principle, as outlined in the table below. A recommendation for pharmacists to be able to initiate antiviral treatment for eligible patients was rejected.

Maskell-Knight wrote: “As anybody with experience in deciphering the tea leaves in government responses will tell you, there is not much difference between not supporting, noting, and supporting in principle – they all mean that the Government is not going to take action.”

More details on the Government’s response to specific recommendations are here. Download a copy of the table above here.

First Nations

The Government’s response says it supports the inquiry’s recommendation for an updated and improved COVID-19 vaccination communication strategy, with a focus on encouraging immunisation in high-risk groups, including Aboriginal and Torres Strait Islander people.

“With high levels of hybrid immunity, ongoing communication will have a particular focus on the vulnerable and at-risk populations. Communication will be tailored for different vulnerable groups to ensure messaging is relevant and accessible”, including translation and co-design with priority populations, they write in their response.

The Government’s response also says partnerships with the National Aboriginal and Torres Strait Islander Health Protection Sub-Committee of the Australian Health Protection Principal Committee, National Aboriginal Community Controlled Health Organisation and Aboriginal and Torres Strait Islander Community Controlled Health Services will be important for dissemination of culturally safe information.

Given the important role of primary healthcare in the long COVID response, higher risks for long COVID that Aboriginal and Torres Strait Islander people face, and the known benefits of culturally safe healthcare, it is noteworthy that the National PASC Plan does not specifically highlight the important role of Aboriginal and Torres Strait Islander health services.

In the inquiry, Dr Jason Agostino, Senior Medical Adviser at the National Aboriginal Community Controlled Health Organisation (NACCHO), “expressed concern that standalone long COVID clinics will likely be difficult to access for many Aboriginal and Torres Strait Islander people”.

Although the Aboriginal Community Controlled Health sector is not explicitly mentioned in the National PASC Plan, it does note that some groups of people including Aboriginal and Torres Strait Islander people have difficulty accessing affordable and timely primary care and “may require additional support”.

The Government supports the inquiry’s recommendation that research has adequate representation from Aboriginal and Torres Strait Islander people, as well as culturally and linguistically diverse people and other priority populations.

The report said that Aim 4 of the MRFF PASC Research Plan prioritises research investment that demonstrates co-design and co-implementation with priority populations.

The Government’s response to the long COVID inquiry also states it recognises the importance of partnering with First Nations people on data matters, and that First Nations Data Sovereignty principles should be considered in data collection, storage and use.

Crooks emphasised the importance of this. She said: “Synthesising national data collection and establishing a COVID-19 database should not have to wait for the CDC to come online in its full form. First Nations data sovereignty should be implemented within an urgent effort to enable this comprehensive data to be accessed and used”.

National data needed

“Robust data” highlighting the true scale and severity of long COVID in Australia is required for the National PASC Plan to be “implemented meaningfully”, according to Professor Martin Hensher, the Henry Baldwin Professorial Research Fellow in Health Systems Sustainability at the Menzies Institute for Medical Research.

He told Croakey that the ABS and/or the AIHW are best suited to running large and rigorous surveys on prevalence, severity and other impacts, as they have done in the USA, UK and Canada. “It’s not a job to be left to researchers or the Australian CDC,” he said.

Similarly, Ramos said the Government “must invest in an immediate and substantive manner into practical research and epidemiological efforts to capture the data around the issue. Not capturing the data is a tried-and-true method of plausible deniability.

“Putting money towards biostatistical, epidemiology, clinical and social science data gathering efforts on long COVID would provide faster and more effective results for everyone.”


Below is a selection of health sector responses to the National PASC Plan and Government’s response; we will report further on related matters in a second article.


Keep COVID on health agendas

Kristy Crooks, member of the APPRISE Executive and Co-Chair of the First Nations Pandemic Research PreparednesS NeTwork (FIRST) Governance Group.

Q: What would you have liked to have seen in the response that is not there now?  

A: It is essential to state the intent to include First Nations peoples in co-designing recommendations and actions. This is not evident in the current document.

Cultural governance and First Nations leadership should be evident in each of the outcomes to ensure:

  • more targeted approaches for First Nations peoples should be embedded in the plan, particularly around building and strengthening the health workforce; communication and resources
  • research led by and with First Nations peoples using principles of co-design and guided by First Nations data sovereignty principles
  • offering different ways of accessing health care particularly for rural and remote areas where access to GPs is limited.

Would have been good to have stronger support for coordinated research that feeds back into decision-making bodies, including longer-term and truly national efforts (involving First Nations people and other priority groups).

Measures and approaches used to gather data for long COVID will systematically exclude First Nations peoples. Pathology requests should include Indigenous status to guide and inform all health-related responses linked to confirmed health issue. Improving data linkage increases understanding of Indigenous burden of illness.

Q: What is the most urgent/important action for the Government to take?  

A: Linking clear communication about long COVID together with public health messaging about infection control and vaccination – the best way to prevent long COVID is to not get infected with COVID in the first place – there hasn’t been enough talk about COVID in general recently.

Synthesising national data collection and establishing a COVID-19 database should not have to wait for the CDC to come online in its full form. First Nations data sovereignty should be implemented within an urgent effort to enable this comprehensive data to be accessed and used.

Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?  

A: Everyone involved in developing strategies/research studies/further discussion/policy should take the responsibility to involve First Nations peoples and other priority population groups not just as advisors, but as partners and decision-makers to ensure equity in outcomes.

Everyone has a responsibility to keep COVID and long COVID on the agenda – the pandemic is not over, and the impacts will be ongoing for a long time.

COVID needs to remain on health agendas. Prevention is a key strategy in reducing future morbidity and mortality. Now is not the time to lose focus.


Accurate, effective communications

Aboriginal Medical Services Alliance Northern Territory (AMSANT)

Q: What would you have liked to have seen in the response that is not there now?

A: A more robust approach to increase COVID-19 vaccination rates and uptake of antiviral medications given there is now reasonable evidence that both protect against long COVID, as well as decreasing hospitalisation and death from the acute COVID-19 illness.

Although deaths are much lower than they have been, they are still averaging two a day and we are likely to see further waves.

This would require a well-developed education and communication strategy which should inform people that COVID-19 causes both long COVID and also increases the risk of a range of serious illnesses such as heart disease, diabetes and dementia.

The Government has do