By Eli A. Friedman, MD and John Bower, MD

Eli A. Friedman, MD

Reconstructing imagery of a prior terrible time can be - in itself - disconcerting at best and painful in reality. Think of a Nazi concentration camp survivor, now 80 years old, attempting to recall what it was like in 1944, after days of transport in a cattle car, where at the end of the journey to be pointed to the left meant life and work while starving as opposed to assignment to the right forced an immediate march to death in a gas chamber.

Now, fast forward 20 years, reflect on the horrific decisions demanded from the newly established "Life or Death Committee," choosing whether someone with kidney failure would or would not be accepted for dialysis. Two nephrologists, two psychiatrists, a social worker and two community representatives actually voted for patient A to live on dialysis, while rejected patient B was left to die with convulsions eased by morphine. Clearly, the Committee had neither malevolent intent, nor intent to harm. Involved medical personnel wanted to get everyone possible onto dialysis. We all knew that we were in a bind.

Nevertheless, the haunting memories of sad exclusions (meaning death) persist and long ago wounds remain open. During the 1960s and early 1970s, sharply limited capacity restricted admission to dialysis programs to those who were "young" (21-45 years old), "responsible" (employed, housewives, full-time students) and "involved" (participating in their care) "candidates." By contrast, in 2002, thanks to Medicare coverage, typical new dialysis patients are in their mid-60s and may be barely alive after a stroke or widespread cancer. In fact, stopping death from kidney failure is a magnificent American success story.

In the beginning - to coopt a phrase - nephrologists amazed that kidney failure would respond to the primitive blood purification process termed hemodialysis had no basis, other than observation and guessing, for prescribing either the frequency or duration of dialysis treatments. Phosphate binders, synthetic vitamin D and recombinant erythropoietin didn't exist. Survival was the key (and only) measure of dialysis success until the bad effects of hypertension, a high phosphate and excess fluid were learned at the expense of patients. Gradually, an optimized dialysis prescription was defined. Switching from twice to thrice weekly dialysis treatments placed a huge burden on the few existing dialysis units then filled to capacity. Continuing the forward motion of delivering what is best for dialyzed ESRD patients forces the proposal that hemodialysis be performed daily, perhaps doubling the current annual Medicare bill.

In the United States today, dialysis therapy has transformed from a therapy restricted to motivated, personally involved patients to a universally available treatment for everyone. Nearly 300,000 Americans live because of hemodialysis and their number is growing by eight percent each year.

Reflecting on memories of our start, I derive joy from knowing that it was the Kings County Hospital program that gave birth to America's premier dialysis patient organization. Our original patient group included Josephine Berman, a 32-year-old wife and mother, admitted near death in October 1964. After five and a half years of Monday and Thursday twice-weekly dialysis, Josephine volunteered to try home hemodialysis and became our first successful home patient. Bubbling with energy in her reclaimed life, Josephine and other Kings County Hospital patients formed the National Association of Patients on Hemodialysis (NAPH), became its president in 1973 and later transformed the organization into the National Association of Patients on Hemodialysis and Transplantation (NAPHT) and today, of course it is our AAKP.

Jo Berman is no longer with us and Kiil dialyzers, twin coil machines and external teflon blood shunts are no longer used. What remains, as an afterglow, is the realization that I was present at the start of something important and worthwhile. After all, what more can one ask of life?

John Bower, MD

Prior to Medicare, in order to be considered by the Selection Committee, the patient had to go through the Evaluation Committee. The criteria to pass the Evaluation Committee were well established.

• You had to be between 15 and 55.

• You could not have diabetes or hypertension.

• You could not have any co-morbid conditions such as bone disease or uremic Neuropathy.

• You had to have rehabilitation potential (i.e. return to work or housewife).

• You must agree to participate in reasonable research efforts.

Having met these criteria, you were presented to the Selection Committee. Members of the committee would determine your social worth as compared to others who also passed the Evaluation Committee. If your social worth was deemed satisfactory, then the anonymous Selection Committee would recommend you be placed on dialysis, provided there was a machine available.

If these criteria and methods were applied to our current patient population, less than 10 percent would qualify for dialysis.

This highly selective dialysis population is what was "sold" to Congress. We told them we would never have over 35,000 people on dialysis in the future and we could never exceed $250 million including transplantation. Congress was told the transplants would "take" (be successful) virtually 100 percent of the time and we would not need money to support these people because they would be rehabilitated and could make enough to afford their own immunosuppressive therapy.

We lied! Not knowingly, but it was incorrect to say the least.

In 1972, when the Medicare ESRD Program was approved, the criteria and Selection Committee went out the window and the flood of patients began. The patient numbers continue to increase - as much as 7-8 percent per year - and we are spending $14 billion or 10 percent of the Medicare budget on less than one tenth of one percent of the Medicare population. In my opinion, this is appropriate and justified but unfair. First, it took me out of my God Shoes. Second, we made dialysis an inalienable right like life, love and the pursuit of happiness. Third, it provided dialysis for all who needed it.

My only complaint is that dialysis is highly discriminatory. We need to make this same access to medical care available to all American citizens. We must not stop with just giving care to patients with ESRD. We need a single payer universal national health program for all Americans, so no matter what the disease they can be treated.

Eli A. Friedman, MD is Chief of the Division of Renal Disease for State University of New York, Health Science Center at Brooklyn. Dr. Friedman serves as the chairman of AAKP's Medical Advisory Board.

John Bower, MD is retired from the University of Mississippi Medical Center, where he served as Professor of Medicine and Chief of the Division of Nephrology. Dr. Bower serves on AAKP's Medical Advisory Board.

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

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