Kidney disease is a growing epidemic in the United States representing a significant health concern. It is estimated that 12 million people in the United States have chronic kidney disease (CKD) and over 300,000 people require dialysis or a kidney transplant in order to stay alive. Reports from the Center for Medicare and Medicaid Services (CMS) reveal that approximately 100,000 new patients begin renal therapy in a given year. In 2000, over 300,000 Americans were on dialysis, and 70,000 had functioning kidney transplants. It is estimated that by 2010 more than 660,000 Americans will have kidney failure.

Nearly $18 billion was spent to treat patients with kidney failure in 1999. Medicare spending for kidney failure has been increasing at 5-10 percent per year, based primarily on growing number of patients. Costs are expected to double in the next 10 years.

Prevention of kidney disease is possible. The complications of type 2 diabetes and high blood pressure can lead to kidney disease, but can be reduced or prevented with careful control. Recent research has also demonstrated that effective medications are now available to treat kidney disease and prevent progression of the disease. Unfortunately, many people do not know they have kidney disease before it develops into a debilitating illness.

The American Association of Kidney Patients (AAKP) has developed a thorough chronic kidney disease education initiative. In the late 1990’s, the Association developed several CKD education goals that included:

• Increase the number of new CKD patients educated regarding kidney disease;

• Follow CKD patients to provide appropriate education at different stages as they approach ESRD and then throughout their lives with chronic illness;

• Create strong awareness of the importance of education of all modality options;

• Create knowledge to assist patients in making educated decisions regarding their healthcare;

• Produce better health outcomes for patients

AAKP CKD PROGRAMS

AAKP has developed several programs to address the ever-increasing educational needs of the CKD population. Our focus in educating CKD patients is much more different than the material ESRD patients receive. Since the CKD population still has functioning kidneys, our focus is on “healthy living.” This means that we stress how to live well, eat well and stay active, in order to slow the progression of kidney disease. The programs offered include: a CKD educational track at our Annual Convention; Kidney Beginnings: The Electronic Newsletter; Kidney Beginnings: The Magazine; a section of the AAKP web site, www.aakp.org, that is devoted to the needs of CKD patients; a special program called “Kidney Care: Finding Your Strength,” where AAKP Chapters and volunteers nationwide host 18 educational sessions to raise awareness about chronic kidney disease and the importance of proper kidney care and a soon to be released CKD handbook that will help patients track their healthcare and understand the physical and psychosocial impact of their disease. We also provide two awards yearly to a patient and healthcare professional who have worked diligently in the area of CKD education and/or research. These programs are intended for people who are at risk for kidney disease, have reduced kidney function or are diagnosed as needing dialysis or a kidney transplant sometime in the future.

Kidney Beginnings: The Magazine

The quarterly magazine provides articles, news items and information of interest to those who may be approaching kidney disease, their family members and healthcare professionals. Its focus is healthy living with chronic kidney disease and is available free of charge from AAKP.

CKD EDUCATIONAL BOOK

AAKP will begin offering this book in the spring. It provides vital information to CKD patients regarding kidney health, conditions leading to kidney disease, challenges of CKD and health issues facing CKD patients. The book also contains a glossary, work sheets for keeping important health information and questions to ask your healthcare professionals.

KIDNEY CARE: FINDING YOUR STRENGTH

One of the most exciting programs AAKP has implemented is called “Kidney Care: Finding Your Strength.” This program, sponsored by Ortho Biotech Inc., provides educational sessions for CKD patients that cover such topics as kidney health, diet, emotional issues, among other items. The program was implemented in 2002 and reached hundreds of patients throughout the country. This year the program has been expanded to 18 locations. The AAKP Web site, www.aakp.org, lists current locations, dates and times. AAKP is also holding educational seminars in Baltimore; Jackson, Miss.; Atlanta; and Jacksonville, Fla., in addition to its nationwide chapter locations.  

AAKP KIDNEY BEGININGS: THE INTERNET NEWSLETTER

This monthly newsletter provides the latest in research related to chronic kidney disease, related news, and current AAKP news. To subscribe to this free Internet newsletter, write to info@aakp.org.

CKD AWARDS

AAKP presents these awards at its annual Convention every year. The AAKP Spirit of Service Award is given to a kidney patient, who has served as a leader and helped raise awareness of chronic kidney disease, within his or her community. The AAKP Visionary Award, which is given to a physician who exemplifies excellence within the CKD community.

AFFECTS OF CKD EDUCATION

In the early stages of kidney disease, the only treatment needed may be a change in diet, control of blood pressure, and the use of some specific medications. When the kidneys are near the end of their function (less than 10% of their normal rate), either dialysis or a kidney transplant is needed. We have seen that early education not only benefits most importantly the patient, but also benefits the entire community. It encourages patient participation in decision-making and care. It provides patients with opportunities to learn about various treatment options.  It increases the likelihood of continued employment. It also may reduce morbidity, mortality, costs and anxiety. But most importantly, an active, knowledgeable patient is equipped with the tools needed to provide his or her own positive health outcomes.

This article originally appeared in the March/April 2003 issue of Kidney Beginnings: The Magazine, Vol. 2, No. 1.

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