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Yi Yang is a Research Fellow with the Melbourne Disability Institute. Her research focuses on reducing health inequalities faced by people with disability.
She says people with disability are missing out on cancer screening that could save their lives. Powerd Media sat down with Ms Yang to discuss why this is happening and what is being done to improve the outcomes.
What do the studies tell us about cancer mortality rates for people with disability?
We [Melbourne Disability Institute] looked at studies all around the world, which they compared cancer outcomes in people with disability to outcomes in people without disability.
What we found in that study was that when you look across the whole cancer journey, from cancer screening participation stage at diagnosis to mortality from cancer, people with disability do much worse. This means that people with disability are missing our own cancer screening programs.
They are more likely to be diagnosed at an advanced stage and then after diagnosis, they're also less likely to survive than people without disability.
What’s causing this barrier?
There are many underlying issues causing these inequalities, for example, many people with disability live with a lot of other health conditions. Routine care like cancer screening may not be on the top priority list, so they tend to have a lower participation rate than people without disability.
Buildings where services are provided, medical equipment used to do screening and information provided for screening and other services may not always be accessible for people with disability. Navigating the health system can be overwhelming, especially for people with disability who need supports for daily activity, transport, or communication.
Sometimes more time and resources are needed to support people with disability, especially with intellectual disability, but it's hard given the current health system is quite overstretched.
Do you think we need alternative methods for screening? What options are available?
I think this comes to what we can do including making the medical equipment for screening accessible. More work needs to be done to make sure that, for example, as you said, the breast screening equipment might not be accessible to people with physical disability. There will need to be other options, and the same issues happen with, say, cervical screening and there are people doing research on how cervical screening can be done or can be made more accessible to people with disability.
In terms of direct or indirect discrimination from people who may not have the knowledge equipped to treat people with disability adequately. What can be achieved there?
In the recent Australian Cancer Plan for the next two years, one of the priorities is to train health professionals so that they are provided with support, information and training to make sure that they understand the needs of people with disability and also can respond to the needs of people with disability. As part of that, it will help to reduce the discrimination from health professionals towards people with disability and so that they can make the reasonable adjustments to provide optimal cancer care, but I know it's a structural issue.
What can be put into place that we've already got the resources for?
Organizations like Cancer Council Victoria, they have released resources to make cancer screening programs more accessible for people with disability and with the guidance of how to make things accessible and what are the key barriers people with disability are currently experiencing. With this information national screening programs say for bowel cancer, breast cancer and cervical cancer can be made more accessible to people with disability.
There is active research into how to improve people's accessibility to screening, treatment, and cares to reduce mortality. We have existing information packs for the general population, and these will be made in multiple accessible formats for people with disabilities.
On top of the discrimination and accessible screening and care, there are other things we should do to make sure people with disability have equitable cancer outcomes.
For example, designing prevention interventions with people with disability so that these interventions can actually work effectively we need to ensure people with disability have a voice which means we need to support people with disability better and involve them in the conversations about their own care so that they can make informed decisions.
With all this we hope that every part of the cancer journey will become better for people with disability.