1. Introduction
   1. Long COVID and repeated COVID infections are challenges that will confront Australia for the foreseeable future. While only a small proportion of people infected with COVID-19 go on to develop long COVID, this equates to possibly hundreds of thousands of Australians experiencing a medical condition that is poorly understood.
   2. Symptoms of long COVID vary in number and severity. In some cases, long COVID can profoundly impact many aspects of a person’s life. Seeking support from health providers for symptoms of long COVID can be challenging as the condition is poorly understood and recognised, and currently, general practitioners (GPs) struggle to know how to diagnose and treat patients with long COVID.
   3. Long COVID can also impact a person’s employment and income. People recovering from long COVID may need to work reduced hours or take extended periods away from work to recover, resulting in loss of income. Living with long COVID and its uncertainty can also take a toll on mental health as some people are no longer able to participate in social activities or daily living to the same extent they were before they became unwell.
   4. Like all countries, Australia is still learning about long COVID, including its risk factors and prognosis. The lack of a consistent definition of long COVID at both the international level and nationally is an overarching issue challenging medical research and the Australian healthcare system’s capacity to recognise and support people with long COVID.
   5. While research into long COVID is underway in Australia and internationally, significant knowledge gaps remain. Greater funding and improved data are required to facilitate research to better understand various aspects of long COVID: its causes, preventative strategies, how to accurately diagnosis it, potential links to other medical conditions, and treatments.
   6. Evidence received throughout the inquiry highlighted that currently, the only way to certainly prevent long COVID is to avoid any COVID-19 infection. To this end, the Committee turned its attention to how long COVID can be prevented through COVID-19 vaccines, antiviral treatments for COVID-19, and reducing transmission by improving indoor air quality and ventilation.
   7. The inquiry identified that the lack of a standardised procedure for diagnosing long COVID presents a challenge for health practitioners and individuals with long COVID alike. Possible treatments to assist people with long COVID with their recovery are also still unknown, although research is ongoing. In the absence of any specific evidence-based treatments, care is supportive, currently involving managing long COVID symptoms.
   8. The Committee heard about the current settings through which long COVID patients are primarily seeking care: predominantly primary care (GPs and allied health) and hospital-based multidisciplinary long COVID clinics. The Committee considered how patients should receive support for long COVID, Australian Government funding including via Medicare, and education and training for the health workforce.
   9. The Australian Government identified long COVID as one of the three key areas of focus for Australia’s COVID-19 response, alongside COVID-19 vaccines and treatments, as part of the National COVID-19 Health Management Plan for 2023.[1] This plan emphasised the need to investigate the longer-term effects of the COVID-19 pandemic in Australia.
   10. The National COVID-19 Health Management Plan for 2023 stated the Australian Government’s commitment to develop a long COVID strategy to ensure the Australian health system can best support long COVID patients. In evidence provided to the Committee, Professor Paul Kelly, the Australian Government’s Chief Medical Officer, confirmed that this strategy will be finalised after the Committee presents this report.[2]
   11. While not a focus of the inquiry, the Committee received evidence about adverse reactions to COVID-19 vaccines and evidence regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which some witnesses and submitters reported is similar to long COVID. The Committee acknowledges that these are legitimate issues that warrant attention. Adverse vaccine reactions to COVID-19 vaccines have been discussed throughout this report where relevant to the broader focus of this inquiry: long COVID and repeated infections. ME/CFS is discussed in an Addendum to this report.
   12. The Department of Health and Aged Care defines COVID-19 as a disease caused by the coronavirus, SARS-CoV-2. Coronaviruses are a large family of viruses that cause respiratory infections.[3] This inquiry is focused on long COVID, which is generally understood as ongoing symptoms for three months or longer following an acute COVID-19 infection. Definitions for long COVID are discussed in Chapter 2.
   13. Throughout the inquiry, witnesses and submitters referred to long COVID using different terminology including post-COVID conditions, chronic COVID, post-acute COVID-19, post-acute sequelae of SARS-CoV-2, and ‘long-haulers’ to refer to people with long COVID. Similarly, when referring to the COVID-19 virus generally, people and organisations used COVID-19, COVID, or SARS-CoV-2 interchangeably.
   14. For consistency, this report predominantly uses the terms ‘long COVID’ and ‘COVID-19’. However, where quotes include alternate terminology, this has been retained for accuracy.

About the inquiry

Objectives and scope

1.15On 1 September 2022, the House of Representatives Standing Committee on Health, Aged Care and Sport adopted an inquiry into long COVID and repeated COVID infections referred by the Minister for Health and Aged Care, the Hon Mark ButlerMP.

1.16The Committee primarily focused on Australia’s management of long COVID. Although repeated COVID infections were a secondary focus of this inquiry’s terms of reference, as the inquiry progressed most of the evidence received related to long COVID. Consequently, the Committee focussed on how repeated infections relate to long COVID. Based on the evidence currently available, it appears that repeated COVID-19 infections may increase a person’s chance of developing long COVID.

1.17Other areas of focus for the inquiry included:

• The patient experience in Australia of long COVID and/or repeated COVID-19 infections, particularly diagnosis and treatment
• The experience of healthcare services providers supporting patients with long COVID and/or repeated COVID-19 infections
• Research into the potential and known effects, causes, risk factors, prevalence, management, and treatment of long COVID and/or repeated COVID-19 infections in Australia
• The health, social, educational and economic impacts in Australia on individuals who develop long COVID and/or have repeated COVID-19 infections, their families, and the broader community, including for groups that face a greater risk of serious illness due to factors such as age, existing health conditions, disability and background
• The impact of long COVID and/or repeated COVID-19 infections on Australia’s overall health system, particularly in relation to deferred treatment, reduced health screening, postponed elective surgery, and increased risk of various conditions including cardiovascular, neurological and immunological conditions in the general population
• Best practice responses regarding the prevention, diagnosis and treatment of long COVID and/or repeated COVID-19 infections, both in Australia and internationally.

Conduct of the inquiry

1.18On 5 September 2022 the Committee issued a media release announcing the inquiry and calling for submissions. The Committee invited submissions from a range of people and organisations with an interest in public health, COVID-19, infectious diseases and chronic diseases. This included federal and state government departments and agencies, industry groups and peak bodies, think tanks, academics, health practitioners, medical research organisations, and the general public.

1.19The inquiry received 566 submissions and an additional 21 supplementary submissions. The full list of submissions presented to the inquiry is at Appendix A.

1.20Of the 566 submissions, 188 were forwarded to the Committee via an online webform independently created and administered by a member of the public. These submissions were generally from individuals with long COVID, or who had family or friends with long COVID.

1.21Given that many submissions contained personal health-related information, the Committee asked individuals who lodged submissions to confirm if they would be comfortable with their submission being published on the Committee webpage. At the request of the submitter, the Committee accepted 273 submissions as name withheld and 12 submissions as confidential. Maintaining privacy over personal health-related information was a common reason cited for these requests.

1.22Unfortunately, the Committee was unable to make contact with 43 submitters to confirm that they had no objections to their submissions being published. These contributions were therefore accepted by the Committee as correspondence.

1.23On 5 December 2022, the Committee published an issues paper for the inquiry.[4] The purpose of this issues paper was to provide interested parties with an update on the Committee’s work to date, and to highlight gaps and areas the Committee intended to examine during public hearings.

1.24The Committee held four days of public hearings:

• 12 October 2022 in Canberra, ACT
• 5 December 2022 in Liverpool, NSW
• 17 February 2023 in Canberra, ACT
• 20 February 2023 in Malvern, VIC.
  25. A list of witnesses and organisations who attended these public hearings is at Appendix B. Transcripts for all public hearings can be found on the Committee’s website.
  26. The Committee also attended a site visit to the Long COVID Clinic at St Vincent’s Hospital in Sydney on 8 December 2022.
  27. The Committee appreciates the strong public engagement in this inquiry, including from many individuals that have not participated in House of Representatives parliamentary committee inquiries previously. Some individuals and organisations have called for the Committee to recommend or discourage specific treatments for long COVID, issue public health advice regarding long COVID, or recommend a detailed model of care. Where possible throughout the inquiry, stakeholders have been informed that as this Committee is a public policy committee, rather than a technical health expert or advisory committee, these types of activities are not within its remit.

Acknowledgements

1.28The Committee would like to thank everyone who provided written submissions and gave evidence at public hearings.

1.29The Committee acknowledges every individual who is experiencing long COVID or being otherwise impacted by long COVID.

1.30In particular, the Committee would like to thank all the individuals who, despite being personally impacted by long COVID, have gone to considerable effort to contribute to this inquiry.

Report structure

1.31The body of this report is structured into six chapters, including this introduction. The final chapter — Chapter 7 — is a list of recommendations:

• Chapter 2 considers existing definitions of long COVID developed by the World Health Organization and the United Kingdom’s National Institute for Health and Care Excellence, before exploring suggestions for an Australian definition of long COVID. This chapter also examines what is currently known about long COVID including its prevalence, symptoms, risk factors, and prognosis.
• Chapter 3 examines research into long COVID and suggested directions for future research. This chapter also looks at existing data collection and data linkage work and discusses how this may be improved.
• Chapter 4 summarises what the Committee heard about what it is like to live with long COVID. This chapter also includes accounts from people with long COVID about how they sought care for their symptoms, and the impact that long COVID has had on many aspects of their lives.
• Chapter 5 considers possible tools to prevent long COVID, namely COVID-19 vaccines, antiviral treatments for COVID-19, and measures to improve indoor air quality.
• Chapter 6 discusses how Australia’s healthcare system should respond to long COVID, including in relation to diagnosis, treatment and management. This chapter also explores settings of care and models of care for long COVID, and considers the enabling factors of funding, as well as education and training for Australia’s health workforce.

Footnotes

[1]Department of Health and Aged Care, National COVID-19 Health Management Plan for 2023, www.health.gov.au/resources/publications/national-covid-19-health-management-plan-for-2023, viewed 29 March 2023.

[2]Professor Paul Kelly, Chief Medical Officer, Department of Health and Aged Care, Committee Hansard, Canberra, 17 February 2023, p. 8.

[3]Department of Health and Aged Care, COVID-19 disease and symptoms, www.health.gov.au/health-alerts/covid-19/symptoms, viewed 12 April 2023.

[4]House of Representatives Standing Committee on Health, Aged Care and Sport, Issues paper, www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/LongandrepeatedCOVID/Issues_Paper, viewed 31 March 2023.