PRINCIPLES OF EFFECTIVE BLEEDING DISORDERS CARE AHF is an advocate for people with bleeding disorders.  As a part of the treatment team, our staff members works with insurers and medical providers to improve the quality of life and care for those living with bleeding disorders.  Principle 1: Care must be comprehensive and multidisciplinary. A comprehensive care plan must focus on the whole person not just the hematological disorder. The federal government subsidizes a network of comprehensive hemophilia treatment centers (HTC) in the United States. The comprehensive care team can include a nurse coordinator, hematologist, orthopedist, physical therapist, oral surgeon, immunologist or infectious disease specialist, and psycho-social worker according to the consumer’s specific situation with other disciplines available as needed. Hemophilia is a lifelong incurable condition. One third of all new cases have no genetic history. Principle 2: Care must be timely to ensure quality of life and minimize complications. Significant complications in hemophilia result from inadequate or delayed treatment. Access to comprehensive care team members must be simple and expeditious. Consumers must have immediate access to appropriate factor concentrate. Principle 3: Self-treatment is the single most important aspect of well-managed hemophilia programs. Reduces long term complications such as joint deformity resulting in expensive replacement. Allows for self-sufficiency and independence and fosters compliance. Dramatically reduces the short and long-term cost of care. Principle 4: In keeping with recommendations of the National Hemophilia Foundation Medical and Scientific Advisory Committee, only factor of the highest purity should be used in the treatment of the coagulation defect. Although HIV- safe products now exist, other viral contaminants still threaten plasma-derived products. Hepatitis C, Hepatitis A, Hepatitis G, Parvovirus B19 and other viral contaminants increase the potential for complications thereby increasing short and long term expense as well as morbidity and mortality. Newborns with hemophilia should be immunized for Hepatitis A and B. Principle 5: Access to and reimbursement for HIV and other viral infection protocols, as well as alternate hemophilia treatment protocols (e.g. prophylaxis), are very important. In 1985 40-50% of the hemophilia population was HIV (+); at this time 10% are (a significant number of those infected are deceased!). Anti-retroviral combination therapy has demonstrated dramatically improved outcomes and is cost-effective when compared against the cost of end stage disease as well as loss of productivity in the person with hemophilia. ITP and HIV disease in the person with hemophilia may lead to cerebral hemorrhage; prophylaxis regimes decrease the potential for this complication. Primary prophylaxis from the advent of therapy dramatically decreases secondary complications from hemophilia, improves quality of life, and lowers long range costs of care. Principle 6: Clients with inhibitors should be evaluated to determine the most effective immune tolerance therapy. Principle 7: The Consumer Bill of Rights and Responsibilities should govern all consumer/ provider interactions. Principle 8: The expectation of improved care and quality of life for the consumer and family must govern all interventions. Principle 9: Every effort must be made to protect and preserve the existing formal and informal psychosocial support systems. Self-dependence and reliance are a significant goal in the comprehensive care of people with hemophilia. Studies indicate that stress can precipitate or exacerbate bleeding episodes. Principle 10: With appropriate and timely care, people with hemophilia will experience improved quality of life, reasonable expectation of completed education and access to the employment market.  High quality standards of care must be maintained. Systems must be maintained to continuously and systematically assess the outcomes of compliance for individual care plans and service delivery. Consumer satisfaction must be assessed at least annually. In summary, Safeguard will provide health plan subscribers with our prompt, cost-effective, hemophilia disease management program. The staff of AHF is knowledgeable and sensitive to the needs of families with bleeding disorders and understands the challenges of coping with these life-threatening conditions. We look forward to serving the needs of your patients who have hemophilia and related inherited bleeding disorders.  Call or E-mail us today. Setting the Standard of Homecare for the Bleeding Disorders Community AHF®, Inc. does not prescribe medications or give medical recommendations to individuals. AHF does not endorse or refer any particular individual to a specific HTC or medical provider.  It is best to obtain medical recommendations from your physician and/or your HTC.