1/1/2008 - Why is it important to be a patient advocate?

If there was one single thing you could do that could make a difference in how well you were able to live with kidney disease, wouldn’t you do it ?

From an individual patient’s perspective, kidney failure is a continuum that last your whole life, and can significantly impact quality of health and life. Multiply that by the current numbers affected and the scope of the problem of kidney disease is staggering: Chronic Kidney Disease (CKD) has been increasing dramatically world wide, and in fact, the Centers for Disease Control (CDC) expect that the current numbers in the US alone will double by the year 2010. Approximately half-a-million Americans suffer from stage 5 CKD: 400,000 are on dialysis, the remainder have received kidney transplants. 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 failure (stage 5 CKD) is the ninth-leading cause of death in the United States. Due in large part to the high prevalence of hypertension and diabetes, and their causal relationship with CKD, it is estimated that more than 600,000 people in the U.S. will require renal replacement therapy by the year within just a few years. This will put added pressure on the renal care community, which is already seeing a shortage of nephrologists, nephrology nurses, and donor organs.

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. Unlike any other time during the 35-year history of 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.