Why Advocate
Each year, nearly 100,000 people are newly diagnosed with kidney failure and another 60,000 die
of from the disease. In fact, End Stage Renal Disease (stage 5 CKD) is the ninth-leading cause of death in the United States.
A Few Facts
Although nearly 30 million Americans—13% of the population—have chronic kidney disease (CKD), most people are unaware they have it. (source)
CKD progresses and often leads to kidney failure, which is
also called end-stage renal disease (ESRD). More than 500,000 Americans have kidney failure and need dialysis or a transplant. (source)
Two-thirds of dialysis patients die within five years of starting treatment, a lower survival rate than most cancer patients. (source)
There are
88,392 people on the kidney waiting list as of April 2011 (source)
Only one thing can help change the course of this disease, and that is for anyone who is affected by it, whether patient,
family member or renal professional, to get involved. The Medicare ESRD Program, lawmakers and CMS
are interested in hearing from people with ESRD whenever input on renal-related issues is sought. Patients especially are
increasingly seen as credible spokespersons advocating not only for a better quality of life, but for life itself on behalf
of the thousands of people across the U.S. who live with CKD. People with CKD must have a solid platform from which to speak
about their needs and the needs of others in order to be certain that governing bodies will continue to consider and/or
implement policies that can positively impact patient care. With an active voice and increased knowledge, the patient will not
only be able to advocate for themselves, but for the many thousands of patients destined to follow.
Even more importantly, studies have borne out that getting involved and being proactive, both personally and in the
larger sense, benefits and improves the quality of one's own life and health. Advocating for better quality of life in general
for kidney patients co-exists with better personal advocacy for one's own health care as well. It's a win-win proposition.
The Wellness & Education Kidney Advocacy Network (weKAN) consists of “patient activists” from across the country whose common goal is to
ensure that people with CKD receive quality care. If you are a person who
lives with kidney disease and would like to receive information about weKAN, please
email weKAN@rsnhope.org.
Reach Out
Description of Process
PDF
Reach Out
Initial Letter of Contact With Representative
Word /
PDF
RSN Advocates Discussing "Bundling" Concerns Have you experienced changes in your care since bundling came into effect? If you'd like to be
part of this type of discussion, join weKAN!
weKAN: Wellness & Education Kidney Advocacy Network
