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“Our mission is to improve the health and well being of those affected by Alpha-1 through support to patients,
educating healthcare professionals and advancing public policy for the Alpha-1 Community.”

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    Testing for AAT Deficiency
    Simply click HERE
    Alpha One International Registry
    provides AAT Deficiency Testing. This AAT Deficiency Testing is a
    COMPLETE CONFIDENCIAL TESTING SERVICE
    and WITHOUT COST TO YOU.
    Please read the detail at: AAT Deficiency Detection Center
    Alpha 1 Advocacy Alliance,
    wants your stories!!

    March 31, 2004

    The Alpha 1 Advocacy Alliance, a patient membership organization, has learned that medical insurers are denying equal access to augmentation therapies based solely on price. The A1AA finds this treatment of patients with Alpha 1 Antitrypsin Deficiency lung disease devastating.

    Alpha 1 lung disease patients have only recently been given a choice in the augmentation therapy they receive. Until the introduction of Aralast® and Zemaira® in 2003, patients were confined to only one product, Prolastin®, to replace the protein they do not make in their own bodies. These new products reflect a higher price due to more extensive filtering and refined production practices. Patients can now have full access to the products and are not hindered by plant shutdowns and the shortages they experienced and continue to deal with. Information on the Bayer website indicates that “Currently the supply of Prolastin® cannot meet patient demand.” It further explains that “ the interval between shipments may be longer than 28 days due to product supply. ” Patients should not be forced to select a therapy based solely on price and be asked to forego treatment or under-dose when supplies are not forth coming.

    Medical insurers and doctors must use thoughtful judgement in the selection of augmentation therapy for their Alpha 1 patients. The manufacturer must be able to keep up with the needs of their patients and supply adequate dosages that do not allow the levels of AAT to dip and drop. Keeping patients at a constant level offers them the best protection against lung destroying infections. The costs of hospitalization and medication and loss of lung tissue cannot outweigh the difference in a less expensive product. In addition, there is a loss of productivity and an increased level of stress when patients must decide when and how much to dose rather than relying on the expertise of their own doctors.

    We appreciate hearing your stories or comments concerning medical insurers which are denying equal access to augmentation therapies based solely on price. Please call our toll free line 1-866-367-2122 with your story.


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    Alpha-1 Advocacy Alliance, PO Box 202, 103 Rapidan Church Lane, Wolftown, VA 22748
    Telephone: 540-948-6777 or 1-866-FOR-A1AA   (1-866-367-2122) Fax # 540-948-6763

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