'He gave us 10 extra years': Australian-first immune centre opens in Canberra

When Emma Gilmour describes the effect an advanced immune treatment had on her late father, Arthur, the change seems extraordinary.

"He went from being in a wheelchair and having seven months straight in hospital about 10 years ago, to pretty much running, getting into trouble ... for climbing up ladders," she said.

Ms Gilmour said her father had been "a very sick man from a very young age", suffering from strokes in his early 40s.

By 2017, the same year he was referred to Associate Professor Simon Jiang at the Australian National University's (ANU) John Curtin School of Medical Research, Ms Gilmour said Arthur Hodge had spent 20 years in debilitating pain and under palliative care.

"Twenty-five years ago, I think, was the first time that we were told to say goodbye to Dad," Ms Gilmour said.

She said various clinicians had attempted diagnosis and treatment without success.

"He had multiple people throwing things at him so he was on lots of medication."

But Associate Professor Jiang's approach, which identifies the genetic and immunological drivers of a patient's immune disease to personalise their treatment, marked a turning point.

"What Simon did for Dad in the 10 years since … he gave us 10 extra years of Dad," Ms Gilmour said.

Australian-first immune centre

The Centre for Personalised Medicine at the Canberra Hospital opened today, offering the same treatment to other Australians with complex immune disorders for the first time.

ACT Health Minister Rachel Stephen-Smith said the centre was about "bringing together the world-leading science with that treatment at the bedside".

"[The centre] will be accepting referrals from right around the country to do something that no other centre has yet been set up to do,"

Ms Stephen-Smith said.

She said the centre was funded by the federal government under the National Health Medical Research Council, the Medical Research Future Fund, the Australian National University (ANU), Canberra Health Services and philanthropic donors.

"It's a real partnership between Canberra Health Services, ANU and those philanthropic donors as well as the Commonwealth research organisations."

The new centre will also work with the National Centre for Indigenous Genomics to identify new treatments for kidney disease in Aboriginal and Torres Strait Islander communities.

'Gets to the crux'

Marilyn Hines was first diagnosed with the rare condition, antisynthetase syndrome, in 2023 and came across Simon's work about one year later.

"I was very fortunate to get referred to Simon ... because it's such a rare condition,"

Ms Hines said.

"Simon gets to the actual crux of what the condition is and why you've got it, and looks at the medications that can actually target the causes of what's going on."

She said her quality of life had improved and she now took fewer medications thanks to the personalised treatment.

"I think it's all really important if you can live a healthier life and you can actually do the activities that you normally do instead of ending up in hospital for a long time."

A tailored approach

Centre for Personalised Medicine director Simon Jiang said a simple way to understand how the treatment works is to imagine a dangerous intersection where crashes keep happening.

He said current medical approaches would assess the intersection and set traffic lights up and a zebra crossing if accidents continued.

His approach would instead analyse each individual car to understand exactly why it was crashing.

"We might find there's one specific fault in one particular car that's causing these accidents to happen. If you fix that, those accidents stop happening,"

he said.

This analysis is done using blood samples to conduct a personalised medicine assessment.

"That encompasses looking at the genome, their immune cells and different things within their body," Associate Professor Jiang said.

Ms Gilmour and her 18-year-old son have learnt that they too have the same rare gene mutation her father Arthur Hodge had.

"Dad felt very guilty … because I have tested positive and so has [my] son. But we saw it as a blessing because it meant we could get help that much further ahead," she said.

"But I'm 25 years better off because Dad found Simon."