June 2023


Taking the long view on COVID

By Monique Ryan
Man stands at pedestrian crossing, Carlton, Melbourne

© Fiorella Bello / Alamy Stock Photo

What are the next steps after the parliamentary committee investigation into long COVID?

On April 24, the House Standing Committee on Health, Aged Care and Sport released the report of its six-month-long investigation into long COVID.

Parliamentary committees are odd beasts; this one possibly odder than most. By strict custom, they’re chaired by a representative from the government, with a deputy from the Opposition and membership drawn from the major parties and crossbench in defined quotas. The numbers are always with the government, but all members can contribute freely to meetings, hearings and reports, and submit a dissenting opinion if they feel it necessary. The anomaly of the health committee of the 47th parliament is that four of its nine members, including me, are doctors – more than any previous iteration. All feel very strongly about the COVID pandemic, and its effects on our population and healthcare system. Our report reflected that passion and frustration, and our sense of loss and urgency about what needs to happen next. 

More than 90 per cent of Australians have now experienced COVID-19 infection. Because most were immunised by the time we got it, and the dominant strain during the biggest outbreaks was the (relatively mild) Omicron, most of us haven’t been all that unwell with it for more than a few days. We’ve recovered quickly, with a sense of relief that it’s been and gone. 

For many, though, it hasn’t gone; symptoms have persisted for more than three months. Those people have the novel disorder we now know as long COVID. Its symptoms are protean – more than 200 are described. Every person’s experience of long COVID is different, but most describe a cough, shortness of breath, wild variation in heart rate on attempts to exercise, brain fog, fatigue, depression and anxiety – a nightmare scenario lasting months, sometimes years. Most eventually recover, but many can’t work or exercise, or function normally while affected. The convalescent bear both the emotional and physical scars of the illness and the fear that it will recur with repeated infection.

The most miserly estimate is that at least 2 per cent of people have persistent symptoms three months after COVID infection. The nub is that infection numbers are high, so high that – at any point – at least 200,000 Australians are affected by long COVID. Long COVID is more likely after severe acute COVID, which most commonly occurs in the elderly, frail or unvaccinated, but the cumulative risk after repeated infections means that most long COVID cases actually affect younger people after mild initial illnesses.

There’s no accepted case definition and no diagnostic test for long COVID. Proposed definitions suggest it’s not diagnosable until symptoms have been present for three months, frustrating efforts at early intervention. It’s a new disease. Some GPs don’t believe in it; about two-thirds are reluctant to diagnose it. Individuals affected by long COVID have had to deal with a largely unknown condition with unproven treatment pathways, minimal supports and uncertain prognosis. The committee heard their outpourings of anger, frustration, grief and loss. 

Reporting strategies for acute COVID have decayed quickly. We no longer know how much COVID is in the community, and we’re doing little to stop its spread. We have no good data on the frequency, manifestations or natural history of long COVID in Australia. We don’t understand its impact on children, the elderly, disabled, immunocompromised or First Nations communities. 

Treatment options are patchy. Antivirals lessen the severity of acute COVID infection and likely decrease the risk of long COVID, but they’re expensive and currently available only to limited cohorts most at risk from severe initial infections. Whether or not they treat long COVID once it develops is unclear. The economic cost of long COVID is significant – even apart from its personal and social impact – so it makes every sense to diagnose and treat it as quickly as possible, but early referral for rehabilitation is predicated on the availability of services. Best practice treatment of long COVID demands both evidence-based guidelines for primary care providers and escalation pathways to multidisciplinary specialist clinics, with tele-rehabilitation services for those in rural and remote communities. Roadblocks to effective care currently include GP shortages and lack of treatment guidelines, limited specialist hospital clinics, and the Dickensian complexities of a Medicare system that demands that chronic conditions be long-term and entrenched before they can be appropriately coded for and funded.

The only way to prevent long COVID is to prevent COVID infection. Concerningly, given the cumulative risk with each infection, the young people out there experiencing their third or fourth dose of COVID are those at highest risk of a potentially severe disease that may involve long-term morbidity. Vaccination decreases the severity of COVID and risk of long COVID, but vaccination uptake has almost stalled in Australia. The Albanese government has shown little appetite for effective advocacy in this space, and the general public has concerns about vaccine side-effects and a perception of diminishing returns from immunisations against COVID. 

Mask use in crowded indoor spaces, testing and isolation also decrease the transmission of the SARS-CoV-2 virus and the risk of long COVID, but public enthusiasm for these measures has waned, and our federal and state governments have effectively waved them away. Almost all COVID infections occur indoors; we’ve not paid enough attention to the importance of clean air. Improving indoor air quality and ventilation in schools will prevent acute illnesses and hence long COVID. The federal government has responsibility for the National Construction Code. We’ve never had national air quality guidelines. We need to improve our buildings and schools, to future-proof them from spreading respiratory illnesses. 

The committee heard again and again that we need better data collection: to understand who’s getting long COVID, how it’s affecting them, how long it lasts, how it’s treated, and what works and what doesn’t. The government is planning a centre for disease control – that centre must develop a capacity for effective monitoring of diseases such as COVID in a way we’ve never previously achieved, and there’s a desperate need to improve the quality of the data we record from GP visits. 

Our medical professionals are exhausted after three years of an ongoing pandemic. GPs are struggling with a workforce crisis resulting from years of stagnant income with increasing workload. Hospitals are struggling to staff outpatient clinics and maintain inpatient services.

Into this foment has come a new, complex and severe medical condition. We don’t yet know how common it is, how to diagnosis it, treat or track it. The impact of climate change and population movements are such that more pandemics are likely; there is an urgent need for us to learn from the lessons of this one.

In this setting, the health committee worked collaboratively and hard, despite our political differences, despite the different skill sets we brought to the inquiry. We listened to the unwell, we believed them, and we undertook to make their voices heard. We consulted scientists, medical professionals and public health experts. We’ve delineated the scope of the work to be done: reviews of how our buildings are designed and built, and big-picture considerations of how we provide public healthcare in this country. Now it’s up to the government to demonstrate the vision and energy for the changes we need.

Monique Ryan

Monique Ryan is a paediatric neurologist and the federal MP for Kooyong.

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