Clinical trial giving John more time

Cystic Fibrosis patient John is enjoying having more time thanks to a clinical trial at The Prince Charles Hospital.

A clinical trial is giving patient John something he hasn’t had much of throughout his life as a person with cystic fibrosis – time.

John describes himself as a late bloomer. Cystic Fibrosis (CF) is usually diagnosed in infancy, but John received his diagnosis that explained years of health challenges, including recurrent lung infections, when he was 23.

Now in his mid 40s, John manages a daily, demanding treatment routine to keep his lungs clear, including inhaled antibiotics, chest physiotherapy and exercise. Balancing this with full time work and a young family has never been easy.

That’s one of the reasons John chose to participate in a clinical trial at The Prince Charles Hospital. His decision reflects the spirit of International Clinical Trials Day, which celebrates patient volunteers and recognises the vital contributions of researchers and healthcare workers striving to improve therapies.

Metro North has nearly 500 clinical trials open across five hospital campuses, offering patients an opportunity to be involved in potential treatments of the future.

John is participating in a study that focuses on medication delivery, assessing whether an inhaled antibiotic typically prescribed twice daily is safe and tolerated when administered once a day, through a highly efficient nebuliser device.

The total daily dose remains the same, but the reduced frequency could significantly cut down medication preparation and equipment cleaning time.

For John, that change is meaningful. He estimates he saves 30 minutes or more by not having to perform the second daily dose.

“When you’re working full time, it can be quite difficult to carve out that time consistently in the morning,” John said.

“If we can reduce the number of times per day, or the amount of time per day for any medication, that will be very helpful.

“Anything to save me time.”

Clinical Research Coordinator Michelle Wood said the trial was generating important insight into how medication delivery could be optimised for people with CF.

The clinical trial involves about one month of study drug administration, followed by a longer term follow up period.

“There can be potential side effects, including airway irritation when nebulising treatments,” Michelle said.

As part of the trial, John attends The Prince Charles Hospital regularly so the study team can closely monitor his progress and safety on the new dosing regimen, with lung function testing and other procedures, including blood tests.

Many clinical trials investigate the safety and effectiveness of new treatments and interventions, but it’s also important to improve medication delivery efficiency and dosing frequency, as this can impact quality of life. Helping people better fit treatments into busy day to day life improves adherence.

Outside the hospital, John is enjoying a return to the volleyball court a few nights a week this year.

He’s benefiting from other revolutionary treatments that have emerged after years of testing in international clinical research trials and are now available to 90 per cent of the Australian CF community.

These days, it’s not his breathing that limits his game, but rather it’s his legs reaching fatigue.

“It’s a nice problem to have,” he said.

“At diagnosis, I was told I might not make it to 40… and now there’s no specific deadline, which is great.”