Published Mar 17, 2013

Sydney, Australia - Cystic fibrosis (CF) is the most common life-shortening genetic disease among Caucasians, affecting around 1 in 2500 individuals worldwide. As the disease progresses, patients require intensive health care treatments. While there is no cure, new treatment options have led to considerable improvements in life expectancy for individuals with CF.  Some of these treatments come at a considerable cost, however, and there are new treatments in the pipeline that could increase the cost of care even more. In order to make informed resource allocation decisions, policy makers need a better understanding of the lifetime costs of CF care.  Having this type of evidence available can make an important contribution to future economic assessments of new therapies, including new genetic therapies, and screening programs. Furthermore, evidence on the long-term health care needs for patients with CF can help clinicians and administrators plan for the future. Using Australian CF registry data, researchers from the University of Technology, Sydney and the University of Melbourne developed a study to estimate the costs of treating the disease by age and severity. The study, “Understanding the Costs of Care for Cystic Fibrosis: An Analysis by Age and Health State,” published in Value in Health,  provides details about the long term resource use patterns of the disease, as well as estimates for potential savings as a result of improved clinical status. “The study provides important new information on the treatment patterns and costs for both pediatric and adult CF patients. The registry data used in our study is very important for long-term diseases such as CF; as such information will not be gained from clinical trials.” Kees van Gool, PhD, Senior Lecturer, CHERE, UTS.

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