S. 323 / H.R. 1428

Comprehensive Immunosuppressive Drug Coverage Act for Kidney Transplant

Patients Act of 2013

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

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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 1020 years ago, only half survived to age

10.Now 85% survive to their 10th birthday!

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

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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

pkdcure.org

Living Donation

• Directed Donation• Altruistic Donation• Paired Kidney

Exchange

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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

pkdcure.org

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

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

pkdcure.org

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

pkdcure.org

Contact Information

• Michelle DavisChief Development Officer

• michelled@pkdcure.org• 816.268.8477