For Tony, research changed everything

At 60, Tony Warwick had just retired and was ready to see the world. He and his wife had a caravan packed and travel plans taking shape across Australia and overseas. Then his wife and friends started noticing something Tony had not. A persistent, dry cough.

“The initial diagnosis was likely cardiac,” Tony says. What followed, in February 2022, was a diagnosis nobody expected. Idiopathic pulmonary fibrosis (IPF), a progressive, terminal lung disease with no known cause and no cure. Tony had never heard of it. Neither had anyone in his life.

The prognosis was blunt. Around 70 per cent of people diagnosed with IPF live three to five years.

There was one piece of good news. Nintedanib, a medication developed through years of dedicated research, had just been approved on the PBS. It would not cure Tony’s IPF, but it could help slow its progress, what he calls “a ray of hope.”

After wading through a torrent of unreliable information online, Tony eventually found the medically accurate answers and genuine care he needed most. Through his mother, Alice Dale, a published author in her nineties who donated the entire proceeds of her latest novel to IPF research, Tony met Associate Professor Vidya Navaratnam and her team, and, in turn, Professor Cecilia Prele and researchers at the Institute for Respiratory Health.

Tony joined an international clinical trial testing a new treatment delivered by nebuliser, carrying the device with him through airports, train stations, monasteries, museums and piazzas across Australia, the Middle East and Europe. “These relationships continue today,” he says, “and mean that I can, in a small manner, support their vital research.”

That support now extends beyond the trial. Tony serves as a patient consumer representative for Professor Prele’s research, contributing his lived experience of IPF to help shape the direction and priorities of future studies.

Four and a half years on, Tony has started the assessment process for a bilateral lung transplant at Fiona Stanley Hospital and recently began using oxygen daily. He still plays golf, cycles, walks the dog and stays social, just at a slower pace, with more rest along the way. He and his wife have travelled internationally and circled Australia twice by caravan with their dog.

“Lucky for me,” Tony says of the prospect of a transplant, “but incredibly sad for a donor family whose generosity allows the gift of life.”

The disease is making everyday tasks harder, adding pressure to his wife, who has her own health challenges, and his two daughters, a load Tony knows will only grow heavier.

For Tony, research changed everything. It gave him a medication when there was little else on offer, a clinical trial to be part of, a continuing role helping shape future research, and researchers who treated him not as a diagnosis but as a person.

“I believe that if IPF was called something like idiopathic pulmonary fibrotic cancer, there would be far greater awareness and funding,” Tony says. “Please help us raise awareness and improve outcomes for patients and families by supporting the vital research being led by people like Professor Prele and Associate Professor Navaratnam.”

For others facing IPF and other forms of respiratory disease, there is still more work to do. That is why researchers at the Institute for Respiratory Health continue working every day to better understand, prevent, diagnose and treat respiratory disease, and why support from our community matters so much.

The Institute for Respiratory Health invites you to be part of Australia’s first Medical Research Giving Day on Wednesday 9 September. You don’t need to wait to make a difference, you can make an early donation today and help fund the research that gave Tony hope.