OzSAGE submission for the Inquiry into Long COVID and Repeated COVID Infections – Parliament of Australia

Key points
OzSAGE members have been patients and many are treating health professionals themselves. They have concerns for the impact of long COVID and post-acute sequelae on their home, community and work life, the difficulties accessing care and antiviral medication, the confusing maze and wait for review from multiple specialists, the lack of clarity for their diagnosis, cause of their symptoms and the uncertainty and conflicting information on appropriate treatment. One of our member patients related, “the frustration is accessing care and then accessing people who are knowledgeable around long COVID and then coordinating care. One of the biggest problems is this brain fog issue. Someone has to coordinate multiple doctors’ appointments from various specialties, none of whom talk to each other. It’s really hard to keep track of all of that.”

1. The precise incidence of long COVID has yet to be determined, but a growing body of scientific evidence indicates that, internationally, at a minimum 4% of vaccinated people who have a breakthrough infection will experience symptoms lasting for three months or longer. More credible estimates, repeated in several studies, are around 15%, with high estimates over 30%. An Australian survey estimated 29%. The incidence of long COVID is higher in unvaccinated people, and reinfection increases the risk. There is no reason to think Australia will be exceptional.

2. Vaccination can reduce the risk of a person developing long COVID and other serious post-acute sequelae of COVID-19. The extent of protection remains uncertain, with estimates ranging from 15 to 41%, indicating less than half of cases of long COVID are prevented through vaccination. A vaccine-only pandemic strategy is insufficient to protect Australians from long COVID and repeat SARS-CoV-2 infections, particularly when, without action, high numbers of infections will continue to occur.

3. In addition to the risk of developing long COVID, people infected with SARS-CoV-2 are at significantly higher risk of serious cardiovascular and metabolic complications, including heart attack, stroke, diabetes, and kidney disease, as well as damage to the nervous and immune systems. There is credible evidence that the risk of experiencing these outcomes increases with repeat infections. Infection during pregnancy may have adverse outcomes for both mother and baby,

4. Children are at risk of developing long COVID. The US Centres for Disease Control (CDC) has also reported that children and adolescents can experience serious post- acute sequelae including myocarditis, cardiomyopathy, kidney failure, diabetes, and pulmonary embolism and other thrombotic events. A Danish study showed the highest risk was in children 0-3 years compared to older children, a compelling reason to vaccinate younger children.

5. There is clear and compelling evidence from around the world that SARS-CoV-2 spreads readily in schools. Children are at high risk of infection and reinfection if

mitigation measures such as improved ventilation and air cleaning technologies are not present in the school environment, as recommended by The Lancet COVID-19 Commission Task Force on Safe School, Safe Work, and Safe Travel, Whitehouse Summit on Improving Indoor Air Quality. Australia’s National Covid-19 Evidence Taskforce does not currently cover ventilation - a gap that we recommend should be filled.

6. SARS-CoV-2 will continue to circulate into the foreseeable future. Australia will experience ongoing waves of COVID-19 due to the winding back of strong preventive and isolation measures, waning vaccine efficacy, suboptimal booster rates and immune evasion. High levels of infections and reinfections will lead to impacts on workforce, reduced life expectancy and diminished quality of life due to long COVID and post-COVID health problems.

7. The symptoms of long COVID - which can include profound fatigue, shortness of breath, and cognitive problems - can be incapacitating. The symptoms could have cardiac, respiratory, immunological or neurocognitive aetiology, but no clear screening, testing and referral protocols exist. There is a need for guidelines on screening, testing and referral. We need better imaging techniques, and increased access to imaging, oxygen delivery services, surge capacity and maintaining respiratory physician and allied personnel, and rehabilitation services including services for patients who cannot manage at home. Treatment guidelines are needed, with early data suggesting antivirals reduce the risk of long COVID.

8. Long COVID is a heterogeneous problem affecting many or some organ systems requiring a holistic perspective on diagnosis, treatment and prevention, not a one-size- fits-all approach. However, patients require a clear treatment pathway. People report being sent to multiple specialists within long COVID clinics which can be confusing, particularly when contradictory advice is sometimes given. Accessing and coordinating care can be difficult when patients are acutely unwell. Some patients report being discharged without a diagnosis or specific treatment.

9. Australia should collect and publish data on long COVID prevalence and incidence. Given conflicting definitions of long COVID, it is difficult to know how many people are affected. There are now International Classification of Diseases (ICD) diagnosis codes for post-COVID conditions. There is a need for information specific to Australia’s demographic profile. Collection of local data in a systematic way at the primary care level should be encouraged.

10. Health care workers, including GPs and emergency physicians, need education and decision support tools to better recognize, diagnose and manage long COVID and post-acute COVID-19 sequelae.

11. In the absence of urgent preventive action, long COVID and repeat SARS-CoV-2 infections will result in enormous health, social, economic costs for Australia without urgent preventive action. The Brookings Institution recently estimated that four million Americans are unable to participate in the workforce due to long COVID. Similar impacts can be expected in Australia. The full impact of long COVID is yet to manifest in Australia because the population was largely protected from infection in 2020 and 2021.

12. Clean indoor air is essential to mitigate repeat SARS-CoV-2 infections and resultant long COVID. Peer countries are moving to set targets for unfiltered indoor CO2 levels (as a proxy for ventilation) in public spaces, such as schools, restaurants, and workplaces. For example, Belgium has recently passed legislation that requires all public places to monitor their indoor air quality and install a CO2 monitor that is visible to the public. In New Zealand, all schools have been supplied with a CO2 monitor and air purifiers are used when ventilation is insufficient. Australia should follow by mandating and championing indoor air quality standards and other clean indoor air technologies. More cost effective is investment in safe indoor air and other mitigations.

13. Australia should also ensure that ongoing, updated vaccine boosters are offered to people of all ages, including children, at appropriate intervals based on evidence for protection against adverse outcomes due to COVID-19 infection, not limited to severe disease and death. People for whom vaccination is contraindicated should be supported with other mitigation measures.

14. Reinfection with SARS-CoV-2 is common and it is likely that the majority of Australians will be infected repeatedly throughout their lifetime (possibly two to three times per year) unless mitigation measures are put in place to limit the spread of COVID-19. These measures should include: improved ventilation in public buildings, better testing regimens, mask mandates in high-risk environments (such as healthcare and public transport) and during times of rising incidence, the provision of adequate sick leave for all employees, and a requirement for people with COVID-19 to isolate so that they do not infect others. Close contacts should test and mask.

15. There is evidence to suggest that early use of anti-viral treatment may reduce the risk of people developing long COVID. Hence wider availability of subsidised antivirals may reduce the burden of Long COVID. It is important that access to subsidised antivirals is broadened, including to young adults, who may suffer the greatest loss of quality of life because of their longer expected lifespan. The cost of anti-viral treatments which prevent around a quarter of post-COVID sequelae, if used in timely manner, can be over a $1200 per person.