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S. 323 / H.R. 1428
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  1. S. 323 / H.R. 1428 Comprehensive Immunosuppressive Drug Coverage Act for Kidney Transplant Patients Act of 2013

  2. How Do You Get PKD? One of most common, life-threatening genetic diseases PKD does not skip a generation Parents with PKD have a 50% chance of passing it to each child Often affects many people in one family Five to 10% of PKD cases are spontaneous (new) mutations

  3. Autosomal Recessive PKD (ARPKD) 20 years ago, only half survived to age 10.Now 85% survive to their 10th birthday! 1 in 20,000 children Often causes death in first month of life 70% survive newborn period, and then 1/3 need dialysis or kidney transplant by age 10

  4. There is No Treatment Fourth leading cause of kidney failure More than 50% of PKD patients will develop kidney failure by age 50 Dialysis and kidney transplantation are their only options for survival

  5. Treatment of Kidney Failure Dialysis • 4 hours a day, 3 days a week • Costs $88,000 a year Kidney Transplant • Provides highest quality of life and best clinical outcomes • More than 108,000 people on the list • Only about 16,000 transplants each year

  6. Living Donation • Directed Donation • Altruistic Donation • Paired Kidney Exchange

  7. S. 323 / H.R. 1428 Immunosuppressive drugs prevent organ rejection Title XVIII of Social Security Act provides patients who are Medicare-eligible only because of kidney failure with immunosuppressive drug coverage, but only for first 36 months Patients left to pay for expensive drugs out-of- pocket, or risk organ failure and death

  8. Annual Per Patient Cost:Immunosuppressive Drugs vs. Dialysis or Second Transplant

  9. Extending Lifetime Coverage of Immunosuppressive Drugs Prolongs lives of Americans Reduces taxpayer costs Allows more dialysis patients to consider a transplant Preserves the number of available kidneys

  10. S. 323 / H.R. 1428 H.R. 1428 – Rep. Michael Burgess – R (TX) • 119 cosponsors (73D, 48R) • House Energy and Commerce • Health • House Ways and Means S. 323 – Sen. Richard Durbin – D (IL) • 17 cosponsors (13D, 3R, 1I) • Senate Finance

  11. Contact Information Michelle DavisChief Development Officer michelled@pkdcure.org 816.268.8477