Building Awareness and Access to Care Through Partnership

Since hemophilia and von Willebrand Disease (VWD) are diagnosed in only a small percentage of the population awareness and understanding of these conditions and their treatment is low. Although hemophilia is indeed a rare condition, VWD is in fact a relatively common, albeit misunderstood, bleeding disorder. VWD in women often remains unrecognized or misdiagnosed because it is not widely understood.

a A survey conducted by the Centers for Disease Control and Prevention (CDC), of women who seek care at hemophilia treatment centers found that on average it takes 16 years for women to obtain a proper diagnosis and receive the appropriate care for their bleeding disorder. In far too many cases, when VWD is not diagnosed the result is an unnecessary hysterectomy.

The National Hemophilia Foundation’s VWD public awareness program – Project Red Flag. CSL Behring is a sponsor of this program. The link to the website is www.projectredflag.org

	The NHLBI report: The Diagnosis, Evaluation, and Management of von Willebrand Disease

CSL Behring is helping lead the way to build awareness, increase diagnosis and advance guidelines for treatment of VWD. In tandem with the CDC, CSL Behring sponsors the National Hemophilia Foundation’s Project Red Flag, which is a national public awareness program for VWD. CSL Behring also collaborated with members of Congress in the development of congressional appropriations language encouraging the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health to develop guidelines for the diagnosis, evaluation and management of VWD.

The approved congressional language resulted in the creation of an NHLBI working group to formulate the first treatment algorithm for VWD. The report, which was published in February 2008, can be viewed and downloaded at the following website: www.nhlbi.nih.gov/health/temp/vwd/.

CSL Behring is also proud to collaborate with patient advocacy organizations to champion efforts at the state level for the introduction and advancement of standards of care legislation. This legislation would include language providing for a screening of von Willebrand disease in cases of menorrhagia prior to a procedure such as a hysterectomy. Standards of Care legislation also preserves full access to all brands of therapy, all sites of care, and to specialty pharmacies that play the unique role in the delivery and management of the therapies for people with bleeding disorders. In some states, such as Minnesota, the standard of care legislation would encompass the larger community of all plasma-derived and recombinant therapies while in others it focuses on bleeding disorders.

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