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 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.
These communication campaigns should be targeted towards those communities with worst outcomes which include Aboriginal people, particularly in very remote and remote areas where death rates were 3.7 times higher than non-Aboriginal people (ABS: COVID-19 Mortality in Australia: Deaths registered until 30 September 2023 | Australian Bureau of Statistics (abs.gov.au)).
The Government should develop a national campaign that Aboriginal organisation could then complement with localised messages.
Q: What is the most urgent/important action for the Government to take?
A: See above (answer to 2) and long term work on improving air quality.
It is important that our pandemic plan is reviewed in light of lessons learnt from COVID-19. This should be an early priority of the new CDC. There should be an emphasis on ensuring that outcomes are equitable given we have learnt that COVID mortality was much higher in disadvantaged groups.
More specifically, a national Aboriginal pandemic plan is also required. It is disappointing that this recommendation was only noted. We are at increased risk of pandemics because of climate change, population mobility and rapid ecological change/damage so we cannot be reassured that we won’t be dealing with another pandemic within a relatively short timeframe. It is also possible that COVID-19 could mutate to become 1) more serious and/or 2) less responsive to current treatments and vaccines.
We support the recommendations that the Government has supported.
Additional recommendations that were supported only in principle or noted by the Government:
Research. Australia should invest in research on long COVID as well as the increase in mortality and morbidity from a range of other illnesses (dementia, diabetes etc.) that is caused by COVID. The research should be nationally coordinated to address priority gaps. We agree with the government that there should be Indigenous involvement in this research. The Government has already committed $50 million to the MRFF for COVID /long COVID research – but more may be needed.
Establish and fund a multidisciplinary advisory body to assess the impact of poor air quality and ventilation and lead the development of national air quality standards. Improved indoor air quality is critical to reducing transmission of COVID and will also reduce the impact of other airborne infectious diseases including potential new pandemics. It has been neglected and put in the too hard basket.
Pharmacist initiated medication. This could be feasible but would need to be done carefully given drug interactions. However, prompt prescribing of antivirals to at-risk people would save lives and reduce hospitalisations. There may be other ways to support people to obtain prescriptions for antivirals promptly such as establishing a dedicated phone service after hours and particularly on weekends.
Greater support and engagement
Dr Elizabeth Deveny, CEO of Consumers Health Forum of Australia
Q: What would you have liked to have seen in the response that is not there now?
A: We are working our way through the detail of the response and PASC plan, and while it is good to see a couple of references in the PASC plan to consumer and carer engagement, we don’t have a clear view of how people living with long COVID will be engaged across all the strategies outlined in the plan.
The plan says that they have a commitment to the person-centred model of care, which is great, but for me true patient-centred care means that the people living with long COVID, and their carers are involved in every aspect of what the plan aims to deliver, not just some.
We always say in the consumer sector, nothing about us – without us, and the PASC plan is no different. Why shouldn’t people living with long COVID, and their carers be involved in every aspect of the plan?
Q: What is the most urgent/important action for the Government to take?
A: Solve the problem of how people are treated. 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. They often tell us that being treated with dignity would make a real difference to their quality of life.
We want to see is people tangible improvements to the lives of people living with long COVID. This could come in the form of having access to support workers or services which will make their everyday life easier, but it could be other things, it really depends on the person’s needs, this is why consumer engagement is so important when we start rolling out supports and solutions for people with long COVID.
We’d also like to see the Australian Government take a global leadership role along with other world governments to start fixing the things in long COVID we can’t fix right now. The way that the global community came together to develop COVID vaccines shows that through collective efforts we can achieve great solutions to complex global problems. That energy and effort needs to be replicated and supported again. Consumers are worried that at the current pace they are going to be stuck with their long COVID issues for the next 20 years before they see real improvement. We all have a collective responsibility not to forget people who are living with long COVID.
Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?
I think that other stakeholders working with people living with long COVID have a continued responsibility to stick by and support the many people in our community who are battling every day to live with long COVID and continue to amplify their voices. Part of this is also about keeping the Government to account about the rollout of the PASC plan and seeing meaningful change happen to the lives of people living with long COVID.
Meaningfully engaging with consumers living with long COVID about what help they need and how they want to see the Government help them through the PASC plan as it is rolled out is critical.
If consumers aren’t engaged properly then I’m doubtful the plan will really have much benefit to people living with long COVID and at the end of the day, who wants to see the Government create a plan which won’t benefit the people it needs to?
Invest in better support
Paige Preston, General Manager of Policy, Advocacy and Prevention Programs at Lung Foundation Australia
Q: What would you have liked to have seen in the response that is not there now?
A: Long COVID is causing many Australians ongoing and debilitating symptoms, such as fatigue, breathlessness, and pain, among others. Lung Foundation Australia’s 2022 community survey found long COVID can cause significant impacts to the daily life of individuals, and since then our organisation has continued to engage with consumers, health professionals and the non-government sector on gaps and opportunities.
More needs to be done now to support those living with long COVID.
We understand the complexities of providing information and support, given long COVID can present and impact people in many different ways. This is why Lung Foundation Australia, in partnership with consumers and key opinion leaders, have developed a comprehensive long COVID resource (see Understanding long COVID booklet).
The National Plan outlines the Government’s commitment to ensuring people with long COVID, as well as their families and carers, can readily access support when and where it is needed, but what was missing was the details of how. The Government must now invest in strategies to provide this support, including dedicated long COVID telehealth support services and holistic information and resources.
Q: What is the most urgent/important action for the Government to take?
A: Lung Foundation Australia urge Government to give ongoing attention to this important issue. Significant delays in the Government’s response to the Inquiry exacerbate the ongoing impact COVID-19 and long COVID are having in Australia. More must be done to support those who are currently living with long COVID. We hope to see appropriate investment in the upcoming budgets.
See our response here: https://lungfoundation.com.au/news/lung-foundation-australia-statement-regarding-national-post-acute-sequelae-of-covid-19-plan/
See our 2022 survey report and recommendations here:https://lungfoundation.com.au/resources/covid-19-a-roadmap-for-recovery/
Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?
A: With evidence continuing to evolve, cooperation is required from a range of stakeholders. Dedicated long COVID clinics have been set up, but frustratingly, people looking to access these services have been faced with significant wait times and many clinics have now closed due to lack of funding. The demand on these services reinforces growing unmet need in the community. To effectively address this need, input and collaboration from different sectors and levels of government is essential.
Federal and state/territory governments must work together to reduce COVID-19 transmission and address gaps in long COVID services, especially while other primary healthcare reforms are being implemented. As further research is conducted in Australia, it’s vital community and the health sector are kept informed and appropriate findings are quickly put into practice.
As part of this, Lung Foundation Australia regularly convene non-government organisations, representing different groups across Australia, who share information on long COVID and discuss opportunities for promoting information and support to the community.
Robust data urgently needed
Professor Martin Hensher, the Henry Baldwin Professorial Research Fellow in Health Systems Sustainability at the Menzies Institute for Medical Research
Q: What would you have liked to have seen in the response that is not there now? What is the most urgent/important action for the Government to take?
A: These questions are linked for me. The most urgent gap remains getting some decent figures on the actual incidence/prevalence and severity of PASC/long COVID in the Australian population.
Yet again, this plan refuses to contemplate running large, national surveys – which is what is done in our peer nations – and puts all the Government’s chips on data integration and data linkage solutions. Given that testing for and reporting of COVID infections is now optional, data on the majority of new COVID infections is no longer entering these data systems, rendering them largely useless for providing estimates of PASC / long COVID cases.
Without robust data on the real scale and severity of the problem, this plan cannot be implemented meaningfully. We will not get to real clarity on the scale of long COVID in Australia unless we start to run large and rigorous surveys like those in the USA, UK, Canada etc on prevalence, severity, impacts, employment effects etc – and the ABS and/or the AIHW are the only institutions who can do this well, it’s not a job to be left to researchers or the ACDC. This is a major missed opportunity that risks undermining the real impact of this plan.
Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?
A: GPs and the GP community need to step up and take PASC / long COVID more seriously – the plan is absolutely correct in its assessment that the heavy lifting on long COVID must happen in primary care.
But states and territories need to do better on ensuring seamless, quicker access to necessary referral care. This does not need to be a “long COVID clinic” – but GPs need to be able to refer patients effectively to a variety of services and disciplines, and those specialists (medical and other) need to be well-informed on PASC/long COVID care and therapies.
Given the scope of long COVID to affect so many body systems and trigger so many complications, most if not all specialists need also to up their game to provide meaningful options to people referred with PASC / long COVID. Researchers need to be thinking of imaginative ways to identify longer-term manifestations of PASC – what might be the longer-term consequences of repeated COVID infections in the population, and how could we assess if new trends are emerging?
Strengthen prevention efforts
Associate Professor Suman Majumdar, Chief Health Officer – COVID and Health Emergencies; and Deputy Program Director, Health Security and Pandemic Preparedness, Burnet Institute
Q: What would you have liked to have seen in the response that is not there now?
A: With this response, long COVID has been acknowledged as a significant new health and societal issue warranting a national plan. Burnet commends the government response and measures taken to date; however, more actions and targeted initiatives are required to match the scale of the current and future burden of long COVID.
There is the opportunity to build on this initial response with the following actions:
- Strengthened communication and engagement to prevent COVID infections.
- A larger research initiative to fast-track treatments and understand pathogenesis of long COVID; and strengthen research to inform implementation of improved indoor air quality
- Specific resources to update clinical guidance and education for clinicians – the science is moving rapidly.
- Funding for multi-disciplinary public long COVID clinics as centres of expertise where primary care providers can coordinate care with.
- A whole of government response to clean indoor air, that works across departments, for example through a task force, drawing on the transdisciplinary expertise that is required.
Q: What is the most urgent/important action for the Government to take?
A: As there are no approved treatments for long COVID, the most important actions to take now are strengthening measures to prevent getting COVID.
We commend the Government’s clearly stated aim of the ongoing response of reducing COVID incidence (or transmission), in addition to the existing aim of reducing COVID severity (hospitalisation and death).
If this is implemented, it will see a shift to a “vaccines-PLUS” strategy – that is multi-layered protections involving stepped up communications, expansion of vaccination criteria (to prevent long COVID), strengthened testing and treatment and a focus on improving indoor air quality through ventilation.
It is especially important that currently widely accepted paradigm that it’s ok for most people to get infected be turned on its head.
Everyone is at risk of long COVID, and this increases with each re-infection. In fact, the highest risk groups are younger adults, females and the majority of people with long COVID had a mild initial acute infection (although having severe diseases carries greater risk).
Even with a lower risk during Omicron and vaccination in Australia, we are still talking about a substantial ongoing burden of LC given re-infection with an epidemic virus.
It’s all go-slow and inaction
Glen Ramos, PhD researcher on pandemic management, a public health policy consultant, and a Director of Australian Health Promotion Association, Australian Epidemiological Association, and Public Health Association of Australia (NSW Branch)
Q: What would you have liked to have seen in the response that is not there now?
A: This is semblance over substance. It represents the typical response that a government provides when it wants to pretend its listening and engaging but in reality doing very little.
It’s a literal nothing-burger that does little more than nod to the recommendations with promises of some action in the future. It is a sad reflection of the overall response to COVID-19 that the current Federal Government has had since its election.
Personally, I would have liked to have seen a lot more concrete, substantive actions with specific deadlines and committed funds. There has been more than ample time to consider this response and what we get is an insult to those who have, and many more who will have, long COVID as a result of this government’s continued go-slow attitude and inaction.
Q: What is the most urgent/important action for the Government to take?
A: All the recommendations that were made are urgent and important. If the Government wanted to act upon all of them, it could certainly choose to do so. That it has decided to respond in the manner that it has is more of a political and values-based decision than one which reflects the importance or urgency of the recommendations.
If I were to choose, say two, actions then first and foremost, it would be to ensure that the incidence of people that experience long COVID is reduced. That the current public health policy settings in relation to COVID actually work towards enhancing and transmitting disease is anathema to anything it says and does in relation to long COVID. It’s like taking water out of your sinking ship but not doing anything about the holes that let the water in!
Secondly, it must invest in an immediate and substantive manner into practical research and epidemiological efforts to capture the data around this issue. Not capturing the data, is a tried-and-true method of plausible deniability – “we don’t know the extent of the problem, so we can’t commit to addressing it….”.
Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?
A: Different groups would have different purposes that they are pursuing, so it is difficult to aggregate them all into one. However, it is important that everyone working in this space utilise the best available evidence – and that includes the lived experience of people who are suffering from long COVID.
The challenge is that unless the Government invests into this effort then we are all scrambling half blindfolded. Putting money towards biostatistical, epidemiological, clinical, and social science data gathering efforts on long COVID would provide faster and more effective results for everyone – and that has global benefits beyond helping those who are suffering this condition.
I guess you could say that a collective responsibility of all these stakeholders is to remind the Federal Government that public health requires public money. The same can be said for the states and territories who seem to want to, at times, shirk their public health responsibilities on this issue as well.
Specialised clinics needed
Dr Steven Faux AM, Rehabilitation and Pain Physician, Conjoint Professor at St Vincent’s Clinical School
Q: What would you have liked to have seen in the response that is not there now?
A: I would have liked there to be a development in the National Health Reform Agreement that encourages the states to fund one-two specialised long COVID clinics per state to act as centres of excellence and as central hubs for information for GPs specialists and rural health professionals.
The development of guidelines through a Royal Australian College of GPs guideline group is critical – although there is already a large coordinated group at Deakin University that was defunded by the government – but there is no mention of recurrent funding, so how will updates to guidelines be made and how will information be distributed and translated?
The Government indicated that their current support for general practice should suffice and apart from recognising long COVID as a chronic disease from November 2024 – there does not appear to be any additional initiatives on the service provision front.
The current issues remain out of pocket expenses for people visiting allied health and GPs which will ultimately result in attendances through the public hospitals emergency departments or outpatient clinics. There appears to be an escalation pathway to non-GP specialists but no definition or compulsion on the states to develop hospital based specialised PASC long COVID clinics, therefore it is assumed that referrals will go to independent clinics and private specialist services increasing the risk of fragmentation – rehab problems to a rehab clinic/private rehabilitation physician, respiratory problems to a respiratory clinic/ private specialist, neurological problems to a neurology clinic/private neurologist which will increase costs and risk of duplication of service.
There is no mention of support for education of specialists who may often simply exclude other disease but are not equipped with referral pathways or education regarding the commencement of treatments for long COVID symptoms – they may simply refer back to the GP.
Also there is no mention of the private health insurance sector to encourage those with private health insurance to be approved for day rehabilitation entitlements, particularly to those affected by deconditioning associated with long COVID – they were silent when it come to the private health sector.
Many of the public long COVID clinics established earlier in the pandemic have been closed. The impact of long COVID is substantial – St Vincent’s long COVID clinic has a waitlist of approximately eight to nine months but we are currently seeing people who caught COVID in the middle of 2023.
We are seeing people who are very sick, with complicated illness, who have not been able to work for months. Slowly, we help them get back to that.
Q: What is the most urgent/important action for the Government to take?
A: To establish a registry and a national data collection framework – without that there is no way of disseminating information and updates relating to treatments and also capturing the breadth or depth of the problem.
Q: What is the responsibility of other stakeholders in this space, whether service providers, consumer groups, researchers, state and territories?
A: The states have stepped back from providing state based clinics (NSW, Vic, TAS, NT) and have devolved all care to GPs; however, the GPs need support to manage a new condition and to be able to develop teams of allied health professionals to treat a multisystem disease, further they will need phone support, up to date information/education from specialist clinics with experience in treating the most severe with available evidence based treatments.
In order to offer early rehabilitation for long COVID, GPs will have a responsibility to assemble a rehab team of allied health practitioners and to have regular case conferences to manage and coordinate care for those moderately or severely affected. The initiative described simply restate recent boosts to funding for general practice such as the Medicare incentive payment.
Research funding described in the Plan is already allocated. The additional $50 million funding initiative is yet to be announced, but expected by April.
National awareness campaign needed
Rural Doctors Association of Australia President, Dr RT Lewandowski
Recognising PASC as a chronic condition within the context of the Australian healthcare system is crucial. As outlined in the Plan, it would open up access to a range of other supports through the Medicare system such as chronic disease management plans and the benefits under MyMedicare. Together with the tripled bulk billing incentive, this would also assist the most vulnerable in our communities in accessing affordable health care for the condition.
RDAA welcomes investment into research on the condition. COVID-19 and PASC are both very new diseases, and the longer-term impacts on our community are not yet known, so research is critically important now.
Due to the other lifestyle factors that can influence the symptoms and continued occurrences of PASC, health education on this condition will be important in community.
It will also be crucial to ensure that clinicians in primary care, emergency departments and urgent care clinics are educated to be aware of the symptoms and diagnose the condition as early as possible. To this end, we would urge the Government to develop and roll out a national awareness campaign targeting the public and health professionals.
• In our next article in this series, we examine the Government’s use of the terminology, Post-Acute Sequelae of COVID-19 (PASC) rather than the more widely used, ‘long COVID’.
See Croakey’s extensive archive of articles on long COVID
