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S. 323 / H.R. 1428. Comprehensive Immunosuppressive Drug Coverage Act for Kidney Transplant Patients Act of 2013. 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 - PowerPoint PPT Presentation
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S. 323 / H.R. 1428Comprehensive 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
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 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
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
pkdcure.org
Living Donation• Directed Donation• Altruistic Donation• Paired Kidney
Exchange
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
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 Davis
Chief Development Officer• [email protected]• 816.268.8477