Regional retiree achieves remission through clinical trial

His kidney function, which had been monitored and stable for years, had suddenly dropped. Further testing revealed the cause: a rare autoimmune condition, ANCA-associated vasculitis, in which the body’s immune system attacks its own blood vessels, . In Michael’s case, it had been silently targeting his kidneys. 

He was immediately sent to Monash Medical Centre (MMC) at Clayton. 

‘I had no semblance of any symptoms,’ he said. ‘The diagnosis came about nearly by accident.’ 

It was during that hospital stay that Associate Professor Jessica Ryan, a nephrologist and the principal investigator of a clinical trial, came to see him. 

She explained that Monash Health was enrolling participants in a global clinical trial testing a new treatment for ANCA-associated vasculitis, specifically, whether a trial drug taken alongside standard immunotherapy could help induce remission and keep the disease under control without the need for repeated immunotherapy doses. 

‘After careful consideration, I enrolled during my hospital stay,’ he said. ‘The trial commenced a week after my discharge.’ 

What followed was 54 weeks of monthly visits to the Clinical Trials Centre at MMC — blood tests, urine samples, examinations with Associate Professor Ryan, and his regular 6-monthly immunotherapy infusion. For 24 of those weeks, he also took either the trial drug or a placebo twice a day. 

It was, by any measure, a significant commitment. Particularly for someone who lives in Sale, 200 kilometres east of the Clinical Trials Centre at Clayton. 

The monthly train commute 

This is where Michael’s story takes a turn that might surprise people who assume clinical trial participation is only realistic for people who live close to major hospitals. 

The Gippsland V/Line, it turns out, stops at Clayton Station, a comfortable 10-minute walk from MMC. 

‘The choice between the stress of a long drive and battling Melbourne traffic was an easy one,’ Michael said. ‘I chose the more relaxing option of travelling by train.’ 

He would catch the 7am service from Sale, arrive at the Clinical Trials Centre by 9:45 am for a 10 am appointment, and would be back on the 1:30 pm train home by the time his consultation was done. The team arranged his appointment times to fit the timetable. 

‘In my experience, the trains all ran on time,’ he added. 

On 3 occasions where consultations ran longer, between 5 and 7 hours, to accommodate his immunotherapy infusions, the trial sponsor covered an overnight hotel stay. 

Remission 

The outcome, when it came, was the one Michael had been hoping for. 

‘I am happy to report that my condition has successfully been put into remission.’ 

Michael said his decision to enrol in the clinical trial was influenced by the prospect of enhanced monitoring, specialist attention, and early access to a potential new treatment.  

‘I was also conscious of the fact that the trial might be helpful in refining the treatment process for ANCA-associated vasculitis for others down the track,’ he said.  

Traveling ‘Business Class’ 

Michael has a message for people undecided about clinical trial participation, particularly those who live regionally and assume the logistics rule them out. 

‘In my experience the pros far outweighed the cons,’ he said. ‘It was like choosing to travel business class rather than economy class.’ 

The care, he says, was exceptional. The same familiar faces at every visit. Consultations that started on time. A level of clinical attention that went beyond what a standard appointment could offer. And trial treatments, consultations and related medical tests provided at no cost. 

‘I can’t speak highly enough of the medical team. They were extremely professional and amiable. The level of care was top notch.’ 

To find out more about clinical trials currently recruiting at Monash Health, speak to your treating clinician or visit the Australian Clinical Trials web site.  

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