The cost of medical care for patients with cystic fibrosis in a health maintenance organization

Background. Cystic fibrosis (CF) is the most common life-shortening genetic disorder among white individuals worldwide. Previous estimates of the cost s of medical care have been based on expert opinion rather than observed co sts. Accurate cost estimates are needed to enable evaluation of the cost-ef fectiveness of new interventions and prenatal genetic screening recommendat ions. Objective. To evaluate the cost of medical care for patients (N = 136) serv ed by a health maintenance organization with a CF center. Methods. Retrospective analysis of data from computerized cost databases an d the Cystic Fibrosis Foundation annual survey. Severity of disease was cla ssified based on the percent predicted forced expiratory volume at I second . Results. The annual cost of medical care in 1996 averaged $13 300 and range d from $6200 among patients with mild disease to $43 300 among patients wit h severe disease. Of total costs, 47% were from hospitalization, 18% were f rom DNase (Pulmozyme), 12% were from clinic visits, and 10% were from outpa tient antibiotics. When the observed costs were used to estimate the costs of medical care for the entire population of CF patients in the United Stat es, these costs were estimated to be $314 million per year in 1996 dollars. Conclusions. We conclude that the cost of medical care for CF varies greatl y with severity but is substantial even among patients with mild disease: T hese findings underscore the need for strategies to ensure good health insu rance coverage and high quality care for all individuals with this conditio n.