Outback life and the growing community of CF families
In Longreach, a remote outback town about 1,200 kilometres from the Queensland Children’s Hospital, families living with cystic fibrosis (CF) are choosing to stay where they know the country and their neighbours best. Connie Lacey, 4, and Sienna Machin, 10, are like sisters in spirit even though they must maintain distance to avoid illness. Their families have formed a tight bond over years, underscoring a broader shift: more families with CF are raising children in rural and regional Australia.
CF is a chronic, life-limiting genetic condition that affects the lungs, pancreas, and digestive system. While there is no cure yet, advances in treatment have reshaped how and where people with CF can live. The decision to stay in the bush hinges on quality of life, access to care, and the comfort of staying near loved ones.
Access to care from a distance: telehealth and local support
Despite the long trips to Brisbane for specialist care, families say the outback can offer more than it appears. “The air is dry, there’s no humidity, it’s a really safe place for Connie to be,” said Connie’s mother, highlighting the potential health benefits of rural living for CF patients. Longreach’s medical services provide strong local support, augmented by telehealth appointments with specialists at the Queensland Children’s Hospital and ongoing guidance from Cystic Fibrosis Queensland. These arrangements help ensure children receive gold-standard care without unnecessary relocation.
Families note that if in-city treatment is required, a flight to Brisbane is arranged with prioritised scheduling due to the once-daily air service. The ability to access timely care through telehealth has transformed the experience of managing CF far from metropolitan hubs.
Practical realities of travel and cost
Travel to Brisbane remains a significant burden. The Patient Travel Subsidy Scheme (PTSS) provides modest assistance—$70 per day for accommodation and 34 cents per kilometre traveled—but many say this fails to cover the full cost of enduring clinic stays. The emotional and financial strain compounds the challenge of managing a chronic illness from a distance. In September, Health Minister Tim Nicholls pledged a review of the scheme in the next state budget, but CF Queensland leaders argue that the current allowances fall far short of needs.
Families emphasize that while subsidies exist, they are not a panacea. The prospect of extended clinic visits or hospitalisation can require weeks away from home, which is especially hard when children are coping with CF’s demanding daily routines.
Community resilience and ongoing improvements
Longreach’s community spirit is a major part of the CF story. For 35 years, locals have rallied around cystic fibrosis research through an annual mini marathon. Named in memory of Meagan Walker, a local CF patient who passed away at 23, the event is organized by her aunt and uncle, Rosemary and Warwick Champion. Their ongoing commitment symbolizes hope: as treatments improve, so too does the quality of life for CF families in rural areas.
Clinics and ongoing education from CF Queensland, along with regular local health visits, help families feel connected to a national network of care. This network complements the care delivered in Longreach, reinforcing that rural living does not equate to poorer outcomes when supported by robust health systems and community resources.
What the future looks like for CF families in the bush
For Connie and Sienna, daily life is about balancing physical health with emotional well-being and social connection. The ability to stay near family, access telehealth, and travel for necessary treatment forms a model by which other rural families can thrive. The outback is not just a backdrop for CF care—it is a living community that demonstrates resilience, adaptability, and a shared commitment to better health outcomes for children with CF.
Conclusion: hope, accessibility, and continued advocacy
The experience of CF families in Longreach highlights a broader trend: rural and regional Australia can be a viable home for children with chronic conditions when care is accessible, flexible, and well-supported. With improvements in treatments, ongoing discussions about funding subsidies, and strong community networks, the future looks brighter for families who choose to raise their children in the bush.
