PKD Advocacy Action Center
What is Advocacy?
Advocacy is the foundation of democracy. It is an attempt to influence public policy, by a person or a group, in a way that brings about legislative action or change.
Members of Congress look to their constituents to bring important information to their attention. As someone with PKD, or family, or a friend or colleague, you know more about PKD than anyone else.
Why is it important?
We encourage people with PKD and those that care about them to meet with their local congressional representatives because just one personal story and one relationship can make a significant difference. Additionally, members of Congress want and need to hear from you.
"As a senator, I was always happy to hear from people from my home state. I received many requests for consideration, and hearing from people helped me set priorities. They informed me about what mattered to Utah – the state that I represented. It's critical for people in the PKD community to vocalize why PKD-related legislation is important in their states. The efforts people put into advocacy truly does have an impact."
– The Honorable Robert F. Bennett (former Senator Utah) and former PKD Foundation Board of Trustees member
Now more than ever, it is critical for patients to advocate on behalf of themselves, families, friends and colleagues with PKD. Share your voice and tell your elected officials how they can help fight PKD.
Take Action: Urge those drafting the 21st Century Cures legislation to ensure that Title 1 - Putting Patients First, Subtitle B - Surrogate Endpoint Qualification and Utilization is included in the final draft.
Currently, there is only one endpoint used in the development of PKD therapies - kidney failure. None of the other indicators of PKD, like total kidney volume or pain, are even allowed to be considered when potential therapies are being developed and tested in clinical trials. The provision would establish a predictable, transparent process for FDA's consideration, and possible qualification, of surrogate endpoints. Provision sponsored by Rep. Cathy McMorris Rodgers (R-WA5)
Take Action: Please contact your representative and senators and urge them to co-sponsor S. 598/H.R. 1130 and support improving the understanding of chronic kidney disease and promoting access to treatments for chronic kidney disease.
Take Action: Please contact members of the Senate and House Labor, Health and Human Services, Education, and Related Agencies Sub-Committee of Appropriations Committees and ask them to support $32 billion for National Institutes of Health (NIH) overall and $2.066 billion for National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in fiscal year 2015.
Take Action: Please contact your representative and ask them to join the Kidney Caucus.
Take Action: Please contact your representative and ask them to join the Rare Disease Caucus.