In 1972, during the term of President Richard Nixon, the House of Representatives was working on a revision of the 1965 Medicare and Medicaid programs. The work of the House was nearly completed when an amendment was proposed and passed, Section 299I of Public Law 92-603, titled: “Chronic Renal Disease Considered to Constitute Disability.” The amendment added the following short phrase to the list of eligibility criteria for Medicare entitlement: “[an individual who] is medically determined to have chronic renal disease and who requires hemodialysis or renal transplantation for such disease.” The bill was passed on October 30, 1972, and the program was enacted on July 1, 1973.
So, 2012 is the 40th anniversary of that historic amendment, which ensured access to kidney care for thousands of people. Although this is not the precise birthday, I was compelled to write this blog because of a front-page article in the Sunday New York Times on Feb. 18. The headline read: “60 Lives, 30 Kidneys, All Linked: Intricate Balancing Act Produces a Record Chain of Transplants.” In the article, the domino chain–transplantation approach is explained. It is truly remarkable how many lives have been changed by this approach, which is increasingly necessary because of the massive shortage of available donor organs.
What caught my eye in the article, however, were some characterizations of dialysis: “Since receiving a diagnosis of diabetes-related renal disease in his mid-40s, he had endured the burning and bloating and dismal tedium of dialysis for nearly a year”; “Only half of dialysis patients survive more than three years”; “Many of the 400,000 Americans who are tethered [italics mine] to dialysis”; “Dialysis … saps the productivity of caregivers as well as of patients.” OK, anyone who has cared for dialysis patients knows that being on dialysis is difficult, and none of us is satisfied with the clinical outcomes or quality of life of our patients, but how often do we or our patients reflect on how far we have come, not just on how long and difficult the road ahead remains?
Thomas Graham is generally regarded as the first pioneer of diffusion-based dialysis. Working as a chemist in Scotland in the 19th century, Graham separated substances using a semipermeable membrane. Over the next century, many innovators contributed to the development of modern dialysis, including John Abel, Leonard Rowntree and Benjamin Turner; Georg Haas; Willem Kolff; and of course Belding Scribner. It was the incredible work of Scribner’s Seattle team that made chronic dialysis possible and a reality.
Here we are in the early 21st century and have the shoulders of such giants on which to stand. The promise of continuously operating, wearable dialysis devices is no longer a dream but rapidly becoming a reality. Recent research suggests that more frequent and longer treatments offer the hope of enhanced survival, fewer hospitalizations and higher quality of life. Extensive research is underway on in vitro growth of functioning kidney tissue and on reaching the Holy Grail of transplantation — true tolerance. While we wait for such breakthroughs, we would do well as nephrologists to read the inspirational book written by Lori Hartwell, someone who has had a life filled with illness, dialysis and transplantation. Lori’s book is “Chronically Happy: Joyful Living in Spite of Chronic Illness.”
So, happy birthday, Medicare ESRD program. Had you never been born, countless millions would have died of kidney failure. The current dominant treatment, dialysis, is not perfect, but it is continually improving. Those of us entrusted with caring for this fragile group of patients must always remember that we are also treating families and caregivers. The responsibility is enormous, but by working together — doctors, nurses, social workers, dietitians, technicians, families, caregivers and researchers — we can continue to do what is the true calling of medicine: provide holistic, patient-centric care that considers all of the unique attributes of each patient and family and strives to enable all patients to live the life to which they aspire. After all, who won the race, the tortoise or the hare?
Kahlil Gibran provides poignant advice for all of us: “Advance, and never halt, for advancing is perfection. Advance and do not fear the thorns in the path, for they draw only corrupt blood.”
I look forward to your comments, until next time.
Striving to bring quality to life,
Allen R. Nissenson, MD
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