Legislative Assembly for the ACT: 2022 Week 12 Hansard (Tuesday, 29 November 2022) . . Page.. 3982 ..
more prevalent in different groups of people. The majority of those who experience lupus are women, and type 1 diabetes is more common in men. Yet it is not fully clear why these different rates of prevalence occur across different genders. While there is a reasonable amount known about the symptoms of various autoimmune diseases, there is still a lot of research to be done. On the other hand there is a lot more work to be done to figure out the different causes of autoimmune disorders, and to figure out potential ways to prevent them.
Diagnosis of autoimmune disorders normally takes a very long time, with various tests to rule out different issues, and lots of differing potential diagnoses. It is not uncommon for an autoimmune disorder to take years to diagnose. This leaves someone suffering from what can be very debilitating symptoms without any certainty, potentially unable to work and with a lot of fear. This subsequently can lead to a deterioration in mental health and other flow-on effects.
As is noted in the motion, there is no cure for almost any autoimmune diseases. However, there are usually ways to manage the symptoms, to varying effect. Compared to many other conditions, the treatment options for autoimmune diseases are often not as well developed or widely available. In a similar vein, there is also no widespread peak body in Australia that dedicates its time and resources to advocating and advising on autoimmune disorders. There are smaller organisations which do good work around individual disorders or similar disorders, but there is no peak body.
As noted previously, there are a lack of public awareness days and campaigns in Australia. In the United States autoimmune awareness month runs through March and provides opportunities for patients, healthcare providers, caregivers, family, friends and other advocates to meet and chat, connect, share their stories and push for more research and support services. A big theme of the awareness month, which is run by the Autoimmune Association of America, is for people to share their stories publicly with friends and family, or on social media. It is all about education. It would be great to see a comprehensive campaign like this in Australia to educate and to raise awareness.
Ms Orr’s motion calls on the government to do two things. The first is to consider options to raise awareness of autoimmune disorders within the ACT community. The second is to report back on these options on the last sitting day next year. I look forward to reading the report when it is returned to the Assembly and, hopefully, being able to work with the minister and the government to implement the options as they come back. I commend Ms Orr’s motion to the Assembly.
MS CASTLEY (Yerrabi) (4.55): The Canberra Liberals support Ms Orr’s motion and support the government looking into issues that affect an individual’s access to services for treatment for autoimmune disease. As Ms Orr mentioned in her motion, there is limited knowledge about what causes many of these autoimmune diseases. They can have mild to severe effects for the patient, and there is no known cure. The best that we can offer patients at the moment is symptom management. Dr Paterson mentioned a few of the diseases. There is also coeliac disease and Hashimoto’s—all sorts of things. The symptoms are incredibly difficult to live with. In some cases, I know people simply cannot leave the house at certain times of the month.