Your Advocacy Can Help Cure PKD
How? By getting involved, your efforts can make a vital difference in the lives of 600,000 Americans suffering from PKD and millions more in future generations of their families. Need proof? The work of our PKD Champions led to a remarkable victory in 2008—the passage and signing into law of the Genetic Information Non-Discrimination Act (GINA), which Senator Edward Kennedy (D-MA) called “the first major civil rights legislation of the 21st century.”
The enactment of GINA shows that your efforts can make a difference for PKD patients and their families. In addition, research efforts currently underway show great promise. It was just 1994 when the first PKD gene was discovered. Now, there are several clinical trials underway that move us closer every day to a treatment and cure.
That’s amazing progress in a short period of time. Our work, however, is far from over. A lack of adequate federal funding for PKD research threatens the momentum in this field. PKD patients and families still face challenges to a better quality of life, such as inadequate Medicare coverage to pay for expensive anti-rejection drugs after a kidney transplant. PKD costs Americans more than $2 billion a year in Medicare costs related to dialysis, transplantation and related therapies.
What’s the next step? Simple: Get involved. Your advocacy can make all the difference in our mission to find a treatment and cure for PKD.
--Sign up for Action Alerts to receive news about important PKD policy issues and steps you can take move them forward.
--Become a PKD Champion, our simple five-step program for those interested in becoming active in our advocacy efforts.
--Learn about our 2008 legislative priorities. Click on the individual links below for more:
Increase federal PKD research funding.
Keep PKD listed in the Peer-Reviewed Medical Research Program.
Expand Medicare coverage of vital meds for kidney6 transplant patients.
Pass a National PKD Awareness Week Resolution in the U.S. Senate.
Enact the Genetic Information Non-Discrimination Act (DONE! Learn what happens next).