Transcript S. 323 / H.R. 1428 - Rare Disease Legislative Advocates

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
• 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 10
20 years ago, only half survived to age 10.
Now 85% survive to their 10th birthday!
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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
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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 Davis
Chief Development Officer
• [email protected]
• 816.268.8477
pkdcure.org