By Kris Robinson

In October of 1971, Shep Glazer, then Vice President of NAPH, (the National Association of Patients on Hemodialysis and the predecessor to AAKP), testified before the House Ways and Means Committee while attached to a dialysis machine. Shep's appearance and testimony, along with many other dedicated individuals, in front of this influential Congressional committee helped to significantly raise the awareness of end-stage renal disease and set the stage for a landmark piece of legislation.

Shortly after these Congressional hearings, Congress approved the legislation that led to the implementation of the Medicare ESRD Program. It provided federal funding for those patients who required dialysis due to end-stage renal disease. It remains one of the most significant developments in the history of the treatment of ESRD in the United States.

After passage by Congress, the Program was established and put into place in 1973. The number of hospitals and clinics offering dialysis treatments increased substantially to compensate for the thousands of patients now eligible for such treatment. 

The Medicare ESRD Program stands as the only federal program that finances disease-specific services to a segment of the American population on virtually a universal basis. Under the Program, those persons who have been diagnosed with end-stage renal disease and are insured under Social Security or are spouses or dependent children of persons who are so insured are eligible for coverage. The Program pays for most dialysis services and supplies for eligible patients. Thus, practically every ESRD patient in the United States has access to life-sustaining dialysis treatment or kidney transplantation without having to exhaust all personal and family resources.

In the 30 years since its inception, the Medicare ESRD Program has provided life-saving dialysis treatments to over 1 million people. In the 1960s and early 1970s, prior to passage of the Social Security Amendments of 1972, treatment was limited to a few individuals, as the costs were high and only a limited number of dialysis machines existed. Those who lived near hospitals with dialysis machines often appeared before specially appointed committees to argue for treatment. Those approved by the committee received dialysis, while those denied were left to die of kidney failure.

The Medicare ESRD Program has been an unqualified success. It has led to an improved quality of life for many patients and their loved ones.  It has helped physicians and researchers achieve better and more efficient treatment options. Certain legislative changes have been made to the Program over the years but its core action remains: it provides life-saving dialysis treatment to thousands of patients who would otherwise be unable to afford it.

Continuous improvement and expansion of programs continue to be an issue for the Medicare ESRD Program. This year, several legislative initiatives are being considered to provide new opportunities for ESRD patients. Topics such as increasing the payment to facilities, payment for daily dialysis, payment for medically necessary additional hemodialysis treatments and coverage of certain medications are all being considered.

U.S. taxpayers pay much more than the original estimated cost for the Program. In 1972, it was estimated that the Program would cost $250 million.  Today, approximately $14 billion is spent on the Medicare ESRD Program. However, even with the major increase in costs over original projections, compared with other parts of the Medicare Program, ESRD treatment has restrained its per capita costs. The increase in costs came primarily from the larger than anticipated numbers of ESRD beneficiaries.

According to an article by Paul Eggars, PhD, titled "Medicare's End Stage Renal Disease Program," "The dialysis payment rate is lower in nominal terms than it was in 1974. In inflation adjusted terms, payment for dialysis is about one-third as great as it was in 1974." Dr. Eggars goes on to say, "despite the large decrease in inflation adjusted rates for dialysis…there has been no evidence of decreased quality of care." This is truly reflected when one realizes that the mortality rates, according to the United States Renal Data System in 1999, have decreased from 28 percent in 1986 to 19 percent in 1996.  Patient outcomes are improving with increases observed in the average Kt/V and URR values, better hematocrits and hemoglobin levels and longer average stays on dialysis.

The original goal of the Medicare ESRD Program has been greatly achieved. Hundreds of thousands of Americans receive life-sustaining care. Legislation and regulations continue to provide quality improvement and expand the Program. As patients, we certainly have come a very long way since the time of wondering if we would receive dialysis and then worrying about how we would pay for it.

 Kris Robinson is AAKP's Executive Director.

This article originally appeared in the May 2002 issue of aakpRENALIFE, Vol. 17, No. 6.

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