Rural CF families form a close-knit network
In Longreach, a remote outback town with a population of about 3,647, two young girls with cystic fibrosis (CF) are navigating life with a disease that is both challenging and manageable thanks to advances in care. Connie Lacey, age 4, and Sienna Machin, age 10, are described as like sisters by their families, even though strict infection-control guidelines restrict how close they can be. “We’re supposed to stay away from each other but we’re friends, so it’s hard,” Sienna explains. If they spend too much time in close proximity, there is a real risk of illness, a constant concern for families living with CF.
Choosing to stay in the bush
Despite the long distance—about 1,200 kilometres from the Queensland Children’s Hospital—both families say relocating to Brisbane isn’t on the table. “Living out here, people think it impacts our access to health care, but that’s not been the case,” says Sienna’s mother, Ms. Machin. CF is a chronic, incurable condition that primarily affects the lungs, pancreas, and digestive system, demanding ongoing, specialized care. The decision to stay rural is shaped by credible access to local healthcare, telehealth, and a supportive community network rather than proximity to a major city.
A new model of care in the countryside
CF Queensland CEO Petrina Fraccaro notes that improvements in treatments have broadened where people with CF can live. “People used to attend clinic four to five times a year and could stay in hospital for one to four weeks if needed,” she says. “Now, many only need to come to clinic once or twice a year.” For families in Longreach, this reduced travel frequency is a crucial benefit, allowing more time at home while still maintaining access to essential expertise through telehealth and coordinated care with Queensland Children’s Hospital and CF Queensland.
Air quality and daily life
The outback air itself can feel therapeutic for some patients. Connie and Sienna attribute part of their improved well-being to the dry, low-humidity environment, which they believe reduces the risk of lung infections compared with city air. “The air is dry, there’s no humidity, it’s a really safe place for Connie to be,” says Connie’s mother, Ms. Lacey. She adds that the care from Longreach’s medical services has been “second to none.” Telehealth appointments and strong links to specialist centres help maintain a high standard of care without the burden of constant city travel.
Travel realities and financial strains
Distance also brings practical challenges. When clinic visits to Brisbane are necessary, families endure the logistical and financial strain of long trips. The Patient Travel Subsidy Scheme (PTSS) provides allowances, but many families say the current levels are insufficient. The scheme currently offers $70 per day for accommodation and 34 cents per kilometre, figures that have not changed since 2013. Queensland Health pledged a review of these figures in the next state budget, but CF Queensland argues that the subsidies still do not cover the full cost of a Brisbane trip for a clinic stay. “The provisions covered by that particular subsidy don’t even touch the sides of the full cost,” Fraccaro notes.
Community spirit and ongoing hope
Longreach has a long-running tradition of supporting CF research and improving patients’ lives. For 35 years, the town has hosted an annual mini marathon to raise funds for cystic fibrosis research, named after Meagan Walker, a local CF patient who died at 23. Organisers Rosemary and Warwick Champion have kept the event alive, turning a local tragedy into a powerful source of hope. Meagan’s story underscores the broader message that advances in treatment continue to unfold, granting more families the option to raise children with CF in regional and rural areas. The community’s support helps families stay hopeful about the future, knowing that improved therapies and better access to care can reduce the burden of distance and elevate the quality of life for children like Connie and Sienna.
