Hemophilia

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Hemophilia

• from Greek haima "blood" philia "to love"

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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

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What Happens to Hemophiliacs?

• Long-Term Damage
• They dont bleed faster, just longer.
• Bleeding in Joints, Muscles, and Organs
• Chronic Pain and Loss of Motion

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The Genetics of Hemophilia

• XX XY
• XX XX XY XY
• XX XY

XX Female XY Male
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The Disease of Royalty
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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

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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 cant work.
• Must rely on state/federal aid programs.
• Untapped productivity.
• Psycologically devastating.

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Proposed Reform
Cost savings from welfare reform can subsidize
insurance reform!!!

• Social Welfare Reform
• Dont povertize people.
• Provide aid when needed.
• Allow productivity when able.
• Insurance Reform
• Lift lifetime caps.
• Weaken exclusionary riders.
• Allow maximum self-care.

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Resources

• http//www.hemophilia.org
• http//www.nhlbi.nih.gov/health/dci/Diseases/hemop
  hilia/hemophilia_what.html
• http//www.wfh.org