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Hemophilia. from Greek haima "blood" + philia "to love". What is It and Who Is Affected?. “Coagulopathy” A genetic bleeding disorder A protein necessary to form a clot is missing 20,000 males in the U.S. A “rare disease” if occurs in less than 200,000 individuals
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Hemophilia from Greek haima "blood" + philia "to love"
What is It and Who Is Affected? • “Coagulopathy” • A genetic bleeding disorder • A protein necessary to form a clot is missing • 20,000 males in the U.S. • A “rare disease” if occurs in less than 200,000 individuals • Severity and Types of Hemophilia • Factor VIII and Factor IX • Mild to Moderate to Severe Col. G Health Economics
What Happens to Hemophiliacs? • Long-Term Damage • They don’t bleed faster, just longer. • Bleeding in Joints, Muscles, and Organs • Chronic Pain and Loss of Motion Col. G Health Economics
The Genetics of Hemophilia XX XY XX XX XY XY XX XY XX = Female XY = Male Col. G Health Economics
The Disease of Royalty Col. G Health Economics
How is Hemophilia Treated? • Factor Replacement • Administered IV when a bleed starts • Has a half-life of 12 hours • Surgeries to Improve Joints • Arthroscopic • Open Surgery • Joint Replacement • Physical Therapy, LOTS OF IT Col. G Health Economics
What Are the Costs? • Up to $150,000 annually for Factor alone. • $250,000 annually for supplies and treatment. • Much higher societal costs! • Due to Medicaid requirements… • Most can’t work. • Must rely on state/federal aid programs. • Untapped productivity. • Psycologically devastating. Col. G Health Economics
Cost savings from welfare reform can subsidize insurance reform!!! Proposed Reform • Social Welfare Reform • Don’t “povertize” people. • Provide aid when needed. • Allow productivity when able. • Insurance Reform • Lift lifetime caps. • Weaken exclusionary riders. • Allow maximum self-care. Col. G Health Economics
Resources • http://www.hemophilia.org • http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_what.html • http://www.wfh.org Col. G Health Economics