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(Chest. 2001;119:745-752.)
© 2001 American College of Chest Physicians

The Direct Medical Costs of {alpha}1-Antitrypsin Deficiency*

C. Daniel Mullins, PhD; Xingyue Huang, MS; Sanjay Merchant, MS, MBA; James K. Stoller, MD, FCCP and for the Alpha One Foundation Research Network Registry Investigators{dagger}

* From the University of Maryland School of Pharmacy (Dr. Mullins, Mr. Huang, and Mr. Merchant), Baltimore, MD; and Department of Pulmonary and Critical Care Medicine (Dr. Stoller), The Cleveland Clinic Foundation, Cleveland, OH. {dagger} A complete list of investigators is presented in the Appendix.

Correspondence to: C. Daniel Mullins, PhD, University of Maryland School of Pharmacy, 6th Floor, 100 N. Greene St, Baltimore, MD 21201; e-mail: dmullins{at}rx.umaryland.edu

Background: For individuals with emphysema because of severe {alpha}1-antitrypsin deficiency, specific therapy called IV augmentation therapy has been available since 1989. Such therapy consists of IV infusion of pooled human plasma {alpha}1-antiprotease.

Methods: To assess the direct medical costs of having {alpha}1-antitrypsin deficiency, the current study surveyed members of the Alpha One Foundation Registry for Individuals With {alpha}1-Antitrypsin Deficiency regarding their annual expenditures for treatment of this disease. Data regarding demographic features, {alpha}1-antitrypsin status, and health-resource utilization were collected from a self-administered questionnaire. Respondents were asked to provide total health-care expenditures, but costs by specific items of care (eg, drugs, physician visits, etc) were not available.

Results: Mean annual cost estimates were higher for PI*ZZ-phenotype individuals ($30,948, n = 292) than for non-PI*ZZ–phenotype individuals ($20,673, n = 53; p = 0.049). Among PI*ZZ-phenotype individuals, self-reported costs of health-care services were further analyzed for those 288 individuals whose {alpha}1-antiprotease use status was reported. For the 185 current {alpha}1-antiprotease users, the mean annual cost was $40,123 (median, $36,000).

Conclusions: Annual health-care expenditures by individuals with {alpha}1-antitrypsin deficiency are very high, whether or not they are currently receiving augmentation therapy. Augmentation therapy adds substantial costs, especially for heavier individuals who are receiving weekly infusions.

Key Words: {alpha}1-antitrypsin deficiency • cost • registry




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