Opinion: Solutions are at hand if government heeds advice

Published in The Daily Telegraph, 13 February 2024

When I nominated Long COVID as the first inquiry of the Standing Committee on Health, Aged Care and Sport for the 47^th Parliament, I did so because of my own experience with persistent symptoms after contracting COVID in April 2022, where I wasn’t able to find adequate information about what I was experiencing in the public sphere, and I wasn’t alone in this.

I believed the Health Committee Inquiry could be useful at least in terms of filling an information gap - there had yet to be an official national inquiry. I was pleased my suggestion was eagerly taken up by the Chair, Dr Mike Freelander and other committee members, four of whom being doctors.

What I didn’t know at the start of the Inquiry, is that it’s not so much an information gap, it’s a data, diagnosis and treatment gulf. We don’t yet have a definition of what Long COVID is in Australia, let alone have consistency in how people are diagnosed and then looked after.

The Committee recommends the World Health Organisation definition of Long COVID be used at the present time, but the definition has its failings, including ambiguity. Despite this, without an official definition, people just can’t get the care they need, whether it be through their GP who may not have received adequate education on Long COVID, or via a Long COVID clinic which we heard some have extraordinary wait times, leaving people without proper treatment for up to a year.

I have also come to realise the relatively short-lived symptoms I had of breathlessness and fatigue were very mild compared to how much some people are suffering from Long COVID around the country, so sick they can barely get out of bed, many months after the onset of their symptoms. Long COVID is having a major impact on lives and livelihoods.

With almost 570 submissions during the Inquiry, it is clear the Committee has uncovered a very significant condition that could affect from between two to 20 per cent of people infected with COVID. The lack of a precise number reflects the whole problem we have with understanding Long COVID in this country. We just don’t have the data.

The number one recommendation of the Inquiry is the establishment of a COVID-19 database, including the recording of Long COVID diagnoses and complications. Data linkages with the States and Territories is essential for its effectiveness, as ultimately it needs to be about a consistency in diagnosis and treatment of people with Long COVID, no matter where they live in Australia.

Not too long after we started the Long COVID Inquiry, my very athletic and healthy 19-year-old son, Byron was diagnosed with Type 1 Diabetes. It is well known that certain viruses can trigger Type 1 which is an autoimmune disease, and the only known virus that Byron had before diagnosis was COVID. When Byron was diagnosed in October 2022, there was very little data on whether it was plausible that COVID caused it, but reports were starting to surface that globally there had been a surge in Type 1 Diabetes amongst children and adolescents.

Six months later, research is showing a correlation between COVID and Type 1, and the Committee was provided evidence of this during the Inquiry. The Victorian Department of Health noted that ‘long COVID may be associated with more serious issues such as an increased risk of developing Diabetes’, and Diabetes Australia told the Committee that ‘research funding should be made available to further investigate COVID related new onset Diabetes’.

The increased prevalence of disease is not just reflected in more cases of Type 1 Diabetes. The evidence heard by the Committee on what COVID can do to your body makes for less than light bedtime reading. The Australian Society for Medical Research advised that future research needs to include how a COVID infection can ‘initiate the development of conditions that evolve over time to cause organ dysfunction or increase the risk of developing other disorders’.

The Committee made a recommendation to the Australian Government that funding is required for coordinated and thorough research into Long COVID. As Deputy Chair of the Committee, I would highly encourage this includes research into the serious diseases that are developing in people that have contracted COVID. It’s a public health imperative.

Research into Long COVID also needs to include mental health, as this is another area that is suffering from a lack of evidence on whether the mental health impacts of Long COVID are biological, or a psychological response to having Long COVID, or possibly both.

It is clear from the Inquiry, that for many people Long COVID is having a significant mental health impact which can be debilitating and life changing. As the Shadow Assistant Minister for Mental Health and Suicide Prevention this concerns me greatly to hear from individuals about their declining mental health including feelings of uselessness, anxiety and depression.

The Committee has recommended mental health support for those with Long COVID must be provided in an affordable, timely and equitable manner, and I would like to see the Australian Government prioritise this recommendation. We are experiencing a mental health crisis in this country, and the seriousness of this should not be underestimated or ignored.

This first-of-its-kind Inquiry into Long COVID has given thousands of people across Australia hope that politicians as policymakers are listening. It is clear there are unacceptable gaps in data and research, and inconsistencies in diagnosis and treatment, particularly when it comes to where people live and their socio-economic status.

The Inquiry has provided the evidence that it doesn’t have to be this way - there’s ready-to-go solutions in the Committee’s recommendations, they just need to be actioned. As Deputy Chair of the Health Committee, I endorse these recommendations, and hope that we see some strong commitments in the Government’s upcoming Budget.