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

3. pkdcure.org 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

4. pkdcure.org Autosomal Recessive PKD (ARPKD) 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 20 years ago, only half survived to age 10. Now 85% survive to their 10th birthday!

5. pkdcure.org 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

6. pkdcure.org 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

7. pkdcure.org Living Donation Directed Donation Altruistic Donation Paired Kidney Exchange

8. pkdcure.org 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

9. pkdcure.org Annual Per Patient Cost: Immunosuppressive Drugs vs. Dialysis or Second Transplant

10. pkdcure.org 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

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

12. pkdcure.org Contact Information Michelle Davis Chief Development Officer michelled@pkdcure.org 816.268.8477