Improving access to treatments and providing holistic care for people with Lupus was the key focus of a recent Parliamentary Friends of Autoimmune Diseases event, held at Parliament House.
The event, titled Spotlight on Lupus, highlighted the growing need for better support for people living with this debilitating autoimmune condition, which affects more than 20,000 Australians—a number greater than those impacted by diabetes or multiple sclerosis. Women are nine times more likely to be diagnosed with Lupus, and it is both more prevalent and severe among Indigenous Australians.
(L-R): Fay Baudains, Lupus Series 2 Facilitator, Professor Eric Morand, Michelle Clewett Lupus Series 1 Facilitator, Andrew Thirlwell, Lupus Ambassador and Director of Dragon Claw Charity.
Professor Eric Morand, Director of Rheumatology at Monash Health, presented his groundbreaking research and advocated for a shift in how Australia approaches autoimmune diseases.
“Lupus is a common autoimmune disease. It’s a bad one. And it takes young women in the prime of their lives,” he said.
Prof. Morand emphasised the urgent need for better treatments. Despite Australia being at the forefront of Lupus research, only one of the three available drugs is listed on the Pharmaceutical Benefits Scheme (PBS). Most patients are still relying on steroids, antimalarials, and chemotherapy drugs—treatments that can lead to severe side effects and long-term organ damage.
Michelle Clewett, Lupus Ambassador for Dragon Claw, shared her personal struggle to get a diagnosis, highlighting how Lupus and other invisible illnesses can be misunderstood.
“For me, diagnosis was life-changing. It tied together a random string of symptoms and meant it wasn’t in my head. Invisible illnesses remain invisible unless we talk about them and work together to try and solve them.”
Dragon Claw, an Australian charity supporting those with autoimmune diseases, continues to provide vital community support through initiatives like weekly Lupus Talks and their Lupus Series—a peer-led program that helps people manage the day-to-day challenges of living with Lupus.
“It is about community support with people who have lived experience who can provide hope that we can get on and live a somewhat normal life,” said Dragon Claw Director and Lupus Ambassador, Andrew Thirlwell.
Professor Morand called for a holistic approach to treatment, similar to how cancer is managed, with specialist care that understands the condition’s complexity.
The event also highlighted the need to improve access to resources for First Nations communities, where rates of autoimmune diseases are up to three to four times higher than the national average. Dragon Claw has developed educational materials specifically for these communities to support earlier diagnosis and treatment.
The Parliamentary Friends of Autoimmune Diseases Group—co-chaired by Jennifer Ware MP, Sophie Scamps MP, and Dr Gordon Reid MP—was established to raise awareness of the challenges facing people with autoimmune diseases and to advocate for better healthcare outcomes.
For more information about Dragon Claw’s support services or to register for Lupus Talks, visit dragonclaw.net.
