Outback Life Meets a Rare Challenge
In the outback town of Longreach, population 3,647, families coping with cystic fibrosis (CF) face daily realities that blend resilience with stubborn practicality. Connie Lacey, 4, and Sienna Machin, 10, are as close as sisters in spirit, yet interactions are carefully measured to avoid cross-infection. The girls describe a quiet, unspoken rule: stay apart long enough to protect each other, even as they remain the best of friends.
“We’re supposed to stay away from each other but we’re friends, so it’s hard,” Sienna says. “If we’re really close to each other, we might get sick.”
Both girls live in Longreach, a rural hub where life slows to a different rhythm. Their families have known each other for years, which makes Connie’s CF diagnosis a bittersweet milestone—the kind that binds communities even tighter.
Why Rural CF Care Is Possible—and Necessary
Cystic fibrosis is a chronic, life-limiting genetic condition that primarily affects the lungs, pancreas, and digestive system. While it remains incurable, treatment has evolved dramatically. Cystic Fibrosis Queensland CEO Petrina Fraccaro notes a shift that makes rural living more viable for people with CF: advance therapies and streamlined care reduce the number of annual clinic visits and hospital stays.
“People used to have to attend clinic appointments four to five times a year, and any hospitalisation could be from one to four weeks,” Fraccaro says. “Now, people only have to come to clinic once, maybe twice, a year.”
Telehealth, Dry Air, and Local Support
Longevity in CF care for these families owes much to flexible health delivery. In Longreach, regular telehealth appointments keep medical teams connected to the state’s specialists, while the Queensland Children’s Hospital and Cystic Fibrosis Queensland ensure the gold standard of care is within reach, despite hours on the road or in the air.
For emergencies or more intensive care, a flight to Brisbane is possible, though daunting. “If we need to go to Brisbane, we jump on a plane and they prioritise us because they know we only have one plane a day,” says Sienna’s mother, a reminder of both the logistical hurdles and the real, human cost of CF in regional Australia.
The Costs and the Care: Travel Subsidies Under Scrutiny
Travel to the city is not just a matter of time; it’s a financial strain. The Patient Travel Subsidy Scheme (PTSS) provides allowances—$70 per day for accommodation and 34 cents per kilometre traveled—but critics say these figures haven’t kept pace with rising costs. The 2013 base rates leave families facing the shortfall when clinic durations stretch or accommodations spike in peak travel times.
Health Minister Tim Nicholls pledged to review the PTSS in the coming state budget, a gesture welcomed by families and CF advocates alike. Cystic Fibrosis Queensland’s Fraccaro calls the current provisions “beyond too little, too late,” arguing that the full cost of trips to Brisbane often dwarfs the support available.
A Community Built on Hope and Research
Beyond the practicalities, outback life strengthens the social fabric around CF. The Longreach community has long rallied for CF research through an annual mini marathon, a sign of how local solidarity translates into medical progress. Named for Meagan Walker, a local CF patient who died at 23, the event—organized by her aunt and uncle, Rosemary and Warwick Champion—has endured for three and a half decades. It’s not just a fundraiser; it’s a beacon of hope for families navigating CF’s uncertain terrain.
For Connie and Sienna, as for many rural families, the bush is home, and so is a system of care that, while imperfect, adapts to the needs of a wide geography. The fresh country air, the ability to access telehealth, and the steadfast support of local clinicians create a paradox: more people with CF are staying rural, thriving alongside a community that refuses to let distance define their health outcomes.
