03 October 2023

The collective efforts of clinicians, researchers and policymakers to address the impacts of long COVID on Victorians were on show as the Department held Victoria’s first scientific conference dedicated to long COVID on Friday 1 September.

Victorian and interstate experts shed light on the latest evidence, but powerful stories from Victorians living with long COVID left the biggest impression on attendees. A common thread was the impact of long COVID on their health and quality of life – and the desire for greater community understanding and acknowledgment that long COVID is real and ongoing.

Each of the five conference sessions opened with Victorians sharing their stories of living with long COVID. The first session featured Gerard and Karlie Flannigan, both of whom contracted COVID in 2020 and have been suffering from long COVID for more than three years. Gerard reflected on the impacts of long COVID on their lives, from their capacity to work, effect on their income, and their ability to manage personal and household affairs that had previously not been an issue. While many conference attendees work with people living with long COVID, Gerard and Karlie’s account of their lives being completely changed by the condition brought home the reality of life with long COVID and reinforced the importance of the day ahead.

A highlight of the conference was the release of the Victorian long COVID health survey key findings, presented by VAHI CEO and conference co-convenor Dr Lance Emerson. The survey of almost 13,000 Victorians was conducted in 2022–23 to better understand the impact of long COVID in Victoria. It revealed:

  • 1 in 7 (14.2%) respondents who contracted COVID met the criteria for having long COVID at the time of the survey.  
  • Respondents who had COVID later in the pandemic generally reported better outcomes. Compared with those who contracted COVID between January 2020 and December 2021, respondents who had contracted COVID between January and October 2022 were more likely to be fully or mostly recovered 3 months after their COVID infection and less likely to report new, persistent symptoms at the time of the survey.
  • 3 in 4 (75.6%) respondents who accessed care for persistent COVID symptoms did so via a GP.

The data from the survey will be made available to researchers on request, enabling further insights to be generated, including via linkage with other administrative health datasets.  

Other topics covered at the conference included the biology of long COVID, models of care and the health economic and system impacts of the condition. Stay tuned for a wrap of these topics in upcoming editions of VAHI news.

The conference closed as it began, focused on those living with long COVID. Gerard shared his hopes for greater understanding of long COVID in the community. Karlie battled fatigue to thank attendees for their support and called for continued efforts in advancing long COVID care for them and their fellow sufferers.

Conference co-convenor Professor David Watters reflected that we are better informed thanks to Victorian research, on which we can now build our next steps. Dr Lance Emerson concluded by legitimising the experience of those with long COVID. “The people who spoke today, from their personal experience, it takes a lot of bravery to speak about your experiences – thank you to you all… We hear you; we hear your voice. We hear you loud and clear.”

Session highlights:

Biology of long COVID  

The research is showing that long COVID is not one disease, but rather has many and varied impacts, with multiple symptoms, affecting multiple organs, requiring multiple treatments. The session reflected multiple research projects are underway in Australia and globally, with strong consumer voice and community engagement guiding researchers and healthcare workers in better understanding the disease.

Models of care for long COVID

The session speakers from primary and acute care settings spoke of improved outcomes for patients when a multi-disciplinary approach to care was used. Examples included a combination of hospital specialists and allied health for symptomatic treatment; psychological support; physical rehabilitation and patient education. With the impacts to patients’ physical, mental and social wellness, speakers noted a multidisciplinary approach significantly improves clinical outcomes.

Health economic and policy impacts of long COVID

Session speakers noted without robust surveillance data, it is hard to know the true scale of the economic impact of long COVID in Australia, but there is emerging evidence of an increase in long-term sickness and disability - with the data emerging from the UK and US. Preliminary analyses from different studies using Victorian linked administrative data also showed higher hospitalisation costs, and higher service use in the 3-6 months for those recovering from COVID.