By Tom Valenta
Brothers Anthony 17 and Nick 13 who live in Sydney were both prescribed Trikafta in April last year, shortly after it was listed on the PBS (Pharmaceutical Benefits Scheme). Some 18 months later, they are both experiencing huge benefits.
Nick, then aged 12, was admitted to the Sydney Children’s Hospital with a chest infection in early April 2022. The paediatric team immediately prescribed Trikafta and he became one of the first CF patients in New South Wales to receive the life changing treatment after it was listed on the PBS.
Because Nick received Trikafta, his older brother, Anthony, who was about to turn 17, and who also lives with CF, was deemed a high priority and he too was prescribed Trikafta. The life-changing treatment had previously been unaffordable for most families, costing more than $250,000 a year, per person.
With the boys’ parents’ permission, the Sydney Children’s Hospitals Network issued a press release soon after Nick received his first dose. Headlined ‘New treatment on PBS gives hope to kids with Cystic Fibrosis,’ in part it stated:
“CF is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. While CF has no cure, Trikafta is the next best thing. The treatment works by improving breathing, reducing the risk of lung infections, and improving weight gain.”
Nick’s mother, Helen, cried tears of joy when she heard the news.
Within weeks, Nick’s lung capacity was clinically tested and was the best it had been for his entire life.
Eighteen months on, both boys say their lives have greatly improved. They take their pills every twelve hours – two in the morning and one in the evening – and their reliance on other medications have greatly reduced. Neither has been hospitalised since they began taking the new ‘wonder drug’ – and a CF-related hospitalisation is, according to the doctors, unlikely in the foreseeable future.
Nick says: “Everything is much easier – playing sport, just getting on with life. I find it easier to breath and it’s made a big difference to every part of my life.” He plays AFL in winter and baseball in summer. Before Trikafta he needed a break to catch his breath in each quarter of football. Now he can play the entire match without a break.
Anthony says: “Within the first three months, I was breathing much easier and my coughing all but stopped. I’ve been able to stop taking all my other meds except for Creon (pancreatic enzymes) which I take before eating.” He has also lost his post-nasal drip that interrupted his sleep and the benefits of a full-night’s sleep are manifest, for both him and his parents.
In December, Anthony will travel to Perth to compete in the All Schools’ National Athletics Championships. It will be the third time in 12 months that he has represented New South Wales as a pole vaulter. While he also competes in high jump and other events, he would love to try decathlon which comprises 10 track-and-field events and would never have been possible without Trikafta. And his dream is to represent his nation in pole vault at the Olympic Games.
Next year, Nick will commence Year 9 at secondary school and Anthony Year 12. Both have achieved better results because of their improved health.
*It’s important to note that everyone’s reaction and response to medication is different. While some people may experience positive outcomes on certain treatments, others may have different experiences, or they may not be eligible to receive the same medication. To understand what medication(s) may be appropriate for you, or if you have any concerns about your current treatment, please speak to your clinical team.
About Tom Valenta
A former journalist and public relations consultant, Tom Valenta is as an author and advocate. In all, he has written thirteen books of non-fiction covering diverse topics including dementia, cystic fibrosis and alcohol and other drugs.
His work in the dementia and cystic fibrosis fields was inspired by personal experiences – he lost his wife, Marie, to Alzheimer’s disease in 2009 and two of his six grandchildren live with cystic fibrosis. In addition to the books, he has written articles, scripts and has advocated in these areas.
Tom’s book on cystic fibrosis, “Every precious breath: Inspirational stories about living with cystic fibrosis,” was published in 2011. For his work, Tom was awarded an Order of Australia Medal (OAM) on Australia Day, 2019.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
