Who would have thought we’d come so far! AAKP started as a group of six dialysis patients talking about the state of healthcare while dialyzing. Today we’ve grown to a national organization that reaches over one million people, including patients, family members, healthcare professionals and friends. The goal of the group, known at the time as the National Association of Patients on Hemodialysis (NAPH), has never changed: to inform patients and the public about kidney disease. But today our name is different and the mission has greatly expanded. We became the American Association of Kidney Patients (AAKP) in 1986. Our mission is to improve the lives of fellow kidney patients and their family members by helping them deal with the emotional, physical and social impact of kidney disease.

In this special issue of aakpRENALIFE, we take a look back at our own history, and celebrate a pivotal moment in the history of the renal community: Shep Glazer testifying before Congress while dialyzing and the subsequentpassage of the Medicare ESRD Act. We will also take a peek into the past, traveling back to 1969 to King’s County Hospital in Brooklyn, New York, were the worlds of Samuel Orenstein, William Blackton, Josephine Berman, Dennis Mitchell, William Cohen and June Crowley collided. While sitting around connected to their dialysis machines, they came up with the idea of starting a national group dedicated to helping fellow patients on dialysis. That group published the first issue of NAPH News. In its first publication, the group’s officers laid out three main goals:

1.  To publish a newsletter that allows dialysis patients to communicate with one another. The newsletter wouldalso give information pertaining to dialysis, reviews of journal articles, technical reports and analyses of legal and economic problems faced by dialysis patients.

2.  To represent the interests of dialysis patients in local, state and federal governments. The group’s collective voice would speak not only for those presently on dialysis, but also the many thousands of people struck by kidney disease each year who die because of lack of equipment and personnel.

3.  To help raise funds for research and development in the dialysis and transplant fields. It only took two years for the group to kick things into high gear. In 1971, AAKP Vice President Shep Glazer put a face to kidney disease before a national audience. Mr. Glazer dialyzed while testifying before the House Ways and Means Committee.

Months later, Congress responded with the passage of the End-Stage Renal Disease (ESRD) Medicare Program, the most significant development in the history of the treatment of ESRD in America. The ESRD Program is federally funded and covers dialysis treatment for ESRD patients who are insured under Medicare. The program pays for most dialysis services and supplies for eligible patients. Dialysis was available before Mr. Glazer’s testimony, but only to wealthy people who could afford it. Today, there are more than 325,000 dialysis patients in the U.S., most of whom receive dialysis treatment because of the ESRD Program at a cost of about $18billion annually to Medicare. According to the United States Renal Data System, the estimated ESRD population will be over 500,000 by the year 2010 and cost the Medicare program over $28 billion.

AAKP is not only concerned with getting patients access to dialysis treatment, but getting patients quality treatment as well. AAKP is focusing on improving the quality of care at our nation’s dialysis centers. With our new partners, Jefferson Government Relations in Washington, D.C., AAKP will now ensure that the voice of all kidney patients is heard by our Congressional leaders.

AAKP has attained those initial goals set by members of NAPH and then some. Today, we print 86,000 copies of aakpRENALIFE and Kidney Beginnings: The Magazine. More than 5,000 people receive our electronic newslettersmonthly. And our website, www.aakp.org, receives over a million hits per month, with over 177,000 unique visitors.

With an estimated 20 million people diagnosed with kidney disease, we know there’s still a need for more education, research and treatment options. Minorities, including African Americans, Hispanics and Asians are the highest risk group. People with diabetes, high blood pressure, a family history of kidney disease, and the elderly also have an increased risk. As the community continues to grow, so does AAKP. And with your continued support, we will continue to be able to help improve the lives of fellow kidney patients and their family members.

Jerome A. Bailey is the Communications Manager for AAKP.