March 5, 2012
Happy Birthday, Medicare Kidney Amendments!
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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Bob Gutman said,
March 21, 2012 @ 1:05 pm
We are all very grateful to Allen for so ably championing the perception that ACO management by hospitals depends on our collective nephrology wisdom. At the risk of being labeled an ungrateful skeptic, I will predict that nothing much will come of this. The early ACO-like experiments in CKD and ESRD management by nephrologists were disappointing. These are very sick people and their intrinsic needs (or demands) are fundamentally unchangeable; and are not going to go away with fancier machines or options for different schedules. The improvements are very marginal, albeit measurable.
Allen raised the story of the chain transplant success. This story has implications worth emphasizing. First, renal transplantation is clearly better than dialysis for the patient, the family and for budgets. I was with the early Scribner team. At that time, so long ago, I had hair; transplantation went from nearly unavailable to being largely a failure. But now is really different. It is far better. The second implication is that living kidney donation is a major goal. The third and most critical implication is that with the right rules and infrastructure, we could have a lot more living transplantation and a lot less dialysis. This change could be enough to give DaVita and FMC investors the shakes.
Note that while the National Organ Transplant Act (NOTA) prohibits the sale of organs, behavior has begun to change under the radar. No money changed hands in this or any chain as far as one can tell, but note that only the first donor is truly altruistic and the last recipient gets a kidney without his family or friends making a “donation.” In fact, all the other donors are not called “altruistic”, but rather “bridge donors.” They are clearly being paid, not in coin of the realm but they are getting something…a kidney for their loved one. It is time to revisit NOTA. It was crafted when there was legitimate concern that rich people would exploit poor people. But now we have a means (the cadaveric kidney system) to accept donations from screened healthy donors who would not have any way of dealing with the recipients. If the government or insurance could pay for donations, there would be enough to clear the backlog in a relatively short time. Those who argue that this is also exploitation ignore the fact that poor people of color dominate the demography of our dialysis population. They are being badly treated by this outdated ethical construct. Duke University Law School and Ethics Institute are presently in the early stages of planning a conference on just this subject. I pray that is will go well and lead to a major paradigm shift to the benefit of renal patients, their families, the people who are willing and able to donate living kidneys and offer a major break in costs to society.
Robert Merrell said,
March 29, 2012 @ 10:36 am
Thanks for the reminder of where we have come from in this field.
When we do our daily activities and plan for the future, it is alway good to remember the past. Not to dwell on it, but to spur us on to continue to build on the successes of others.
Dottie said,
January 17, 2013 @ 8:57 pm
My mother is 85 years old. She has to have dialysis three times a week. She has to be in a Skilled Care Facility but we are having problems finding a facility that provides transportation to the dialysis centers. Does anyone have any information that will help. Either in Mobile, Alabama or Fairhope, AL.
kikicol said,
February 9, 2013 @ 4:15 pm
I have been on hemo- a year before going on home hemo. I love it so much, I’m sorry about comenting on a birthday, but I have no Idea what you meAN AND THIS MIGHT NOT BE THE RIGHT ON TO GET INFO OR TIPS. i HAVE NOT BEEN DOING HOME HEMO FOR JUST A DEW MONTHS. MY dR . SAID i WOULD START FEELING BETTER MY FIRST WEEK AND HE WAS SO TRUE. i DO IT 2 HOURS A DAY FOR 5 DAYS. I CAN DO ANY DAY i WANT AND TIME. MY SON,STEVE, IS THE MANAGER. MY HUSBAND COULD DO IT BUT HE HAS DEVLOPED PARKINSON’S