At the end of May, I had 15 minutes with the Queensland Health Minister at the Regional Cabinet Meeting in Townsville, and boy, did I try to make the most of it.
I haven’t felt urgency like that since my last flare.
I handed over a letter that cut straight to the point: IBD care in Queensland is falling short. Diagnosis is delayed. Support is practically non-existent. And people are paying for it with their health.
In that room, I wasn’t making noise for the sake of it. I was pushing for tangible, evidence-backed reform, because that’s what this work is. Not just awareness. Action. Advocacy. And showing up in the rooms where decisions are made.
What I Said
IBD isn’t rare anymore. It’s not niche. It’s one of the fastest growing chronic diseases in Australia, and Queensland has some of the highest numbers of emergency admissions related to it.
So I didn’t waste time.
I laid out exactly what needs to change:
- Calprotectin testing must be standard in primary care. It’s fast, accurate, and could stop people from being misdiagnosed for years.
- GPs need better training and pathways to refer earlier. Patients shouldn’t have to hit crisis point to be taken seriously.
- Wraparound care! Mental health support, dietitians, social workers, needs to be built into public IBD care. Not just offered if you can pay.
- And funded research, not “nice to have” grants, but real investment into prevention, early detection, and what works.
These are changes that would have made a measurable difference to my life, and still could for thousands of others.
“If this system worked how it was meant to, I wouldn’t be sitting in this room asking for the basics.”
Why This Isn’t Just Another Submission
After that meeting, I was contacted by Associate Professor Gareth Walker, Clinical Lead for IBD at Royal Brisbane and Women’s Hospital and Senior Lecturer at the University of Queensland. His team is doing some of the most progressive work in the country: real-time stool inflammation tracking, flare clinics to reduce emergency admissions, and major research into precision medicine and diet therapy.
We spoke about regional care gaps, research, and early diagnosis. That conversation became a joint letter — from both of us — sent to the Health Minister, demanding the kind of reform that would actually shift patient outcomes.
“Integrating patient experiences into our research and clinical practices is essential. Collaborations like this ensure our efforts are aligned with the real-world needs of those affected by IBD.”
– A/Prof Gareth Walker
The Bigger Picture
According to the 2025 State of the Nation in IBD report:
- Over 179,000 Australians are currently living with IBD
- The economic cost is $7.8 billion annually
- 1 in 3 people are misdiagnosed
- 1 in 4 wait more than 2 years for a correct diagnosis
- People with IBD are 3x more likely to experience poor mental health
- Queensland has no state-funded support program for IBD patients
Despite being a major public health issue, IBD remains underdiagnosed, underfunded and widely misunderstood, especially in regional areas.
Why IBD Hub Was There
IBD Hub wasn’t created to just raise awareness. It was created because awareness alone wasn’t enough. This meeting was about putting lived experience into the rooms where it’s so often missing.
Behind every post and blog is the advocacy that happens off-screen. The letters. The emails. The hours of reading reports and research so I can speak to what’s really going on.
I’m not funded to do this. I do it because people with IBD deserve better than late-stage diagnoses, long hospital stays, and a system that tells them to just “manage it.”
We’re not asking for miracles. We’re asking for change that’s already overdue, and this was a step in the right direction.
Change is slow. But we are making moves. And if no one else is going to fight for us, I will.
This blog reflects my personal experience and advocacy efforts. It is not medical advice or an official position of Queensland Health or any other institution.
