Understanding the costs of care for cystic fibrosis: an analysis by age and severity. CHERE Working Paper 2011/1
Cystic fibrosis (CF) is the most common life-shortening genetic disease, with an incidence of 1 in 2500 and carrier frequency of 1 in 25, amongst Caucasians (Welsh, Ramsey et al. 2001). With recent advances in treatment, most children with CF now can expect to survive into adulthood and life expectancy has improved considerably. CF is a progressive disease which affects many organ systems and as the disease progresses patients require more intensive health care that includes home based care and medications, along with more frequent and prolonged hospital admissions, and in around half of all cases lung transplantation.(Jason, Leah et al. 2009; Paul, Leah et al. 2009). As new and improving treatment options become available, the pattern of care will change, which will impact on the costs of treatment and on patient outcomes. For example, two of the key medications developed in the last 15 years, Pulmozyme and TOBI (not licensed for use in Australia) cost A$14,000 pa; and more sophisticated technology, such as gene-based treatments will be equally, or more expensive. Thus health care policy makers and funders will expect rigorous assessments of the cost-effectiveness of new treatments.
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