As we navigate the journey out of the COVID-19 pandemic, it is clear the virus and its mutations have defined the 2020s, but the remnants of the virus have left a lasting sting across the globe. As much as we would all like to forget about it, it’s crucial we apply as much of the knowledge we have learned as we can from the last three years.
We are still navigating our way out of the pandemic and, as much as people might’ve moved on and perhaps forgotten about it, there’s more than meets the eye when we look at its impacts — especially for people with disability.
The label ‘long COVID’ was coined early in the pandemic but has since been introduced into medical diction. In-short, it’s the persistent symptoms that stay with someone well after the virus has left the system.
These can include fatigue, chest pain, cognitive dysfunction, insomnia, headaches, and more. These might sound minor in retrospect, but there’s an unexpectedly frightening reality of long COVID in Australia.
More than just infection
Research from The Lancet Public Health (2021) shows people with disability are of higher risk of death from COVID than other people, and those with intellectual disability are three to nine times more at risk of death from COVID than the public. Comparable data has still not been reported for Australians with disability, which, even with that data made available, may not lead to any different findings.
Concern about what’s next
The Advisory Committee for the COVID-19 Response for People with Disability met most recently in December.The Committee is equipped with people including those with lived experience, from disability organisations, research, health care, and government sectors, and their main role is to provide advice to Australia’s Chief Health Officer.
In the meeting, Advocacy for Inclusion presented its paper discussing the disproportionate impact of the COVID-19 pandemic on people with disability. This includes a higher risk from infection, reduced accessibility to health and support services, and additional impacts from social barriers as mentioned previously. They also called for streamlined access to services for those people with disability facing long COVID.
The committee outlined plans to:
- promote COVID-safe behaviours;
- raise awareness of PCR testing locations; and
- remind the public that everyone is experiencing the pandemic differently through the launch of a video on the experiences of people with disability.
The department also provided an update on COVID-19 testing and vaccination covering:
- arrangements for PCR testing in 2023. The Department has published a fact sheet on access to PCR tests, which will remain free for people who need them.
- the durable protection four doses of COVID-19 vaccine offer from severe disease, and
- the similarity of protection offered by different MRNA boosters. The best booster to have is the one available to you.
A member said some vulnerable people didn’t receive a booster for over six months and asked for consideration of booster recommendations that give GPs more flexibility to address patient circumstances.
As much as the Advisory Committee covered off, there is still much to be done.
Impacts of a lack of action
An Advisory Committee member said it is quite astounding to consider that a significant number of people with disability have not had the recommended COVID vaccinations and boosters in Australia. In-fact, almost a quarter of NDIS participants aged 16 and over have not had three COVID vaccine doses; less than one-third have had four doses. Worryingly, the vaccination rates of the 88% people with disability who aren’t on the NDIS, are not reported.
It’s clear that, while we have come so far to protect most Australians, there is still much to do. The calls for action below are by no means ridiculing policymakers or the Chief Health Officer, they are a series of potential next steps.
According to the Australian Bureau of Statistics (ABS), despite Australia’s over-10,000 COVID-19 deaths to 28 February 2023, it is still undetermined how many of these were people with disability. Secondly, the Australian Government and the ABS don’t share the total number of people with disability who have tested positive to the virus. As much as revealing these statistics could be deemed a privacy concern, it is difficult to act on an issue if the severity of it is not known. People with Disability Australia (PwDA) President Samantha Connor told Disability Support Guide that Australia’s data collection system on the matter is “exceptionally poor”.
Addressing issues is a fitting first step. Our political leaders need to be frank and assertive in communicating the pandemic isn’t over. Of course, being more transparent doesn’t necessarily instantly make our leaders the bearers of doom-and-gloom either.
So, what should be the real end goal?
The real end goal should be to make re-entering society after the pandemic safer for people with disability. Another long-term goal should also be the health system’s strengthening to deal with long COVID. Ultimately, the aim is to the changes of outcomes for people with disability.