A regular viewer recently wrote KidneyBuzz.com and said, "I am in tears. I just got booted from the kidney transplant list. They said I am too sick to be listed. I do not know why because my numbers hardly changed. Now, I am assuming that I will be on Dialysis for the rest of my life. Just wanted to know if you had any info that might help me."
The over 100,000 Chronic Kidney Disease patients who are awaiting a kidney transplant, and the many more who are considering the idea of getting on the Kidney Transplant Waiting List, will be shocked to learn that in an effort to get or keep a good performance rating from the federal government, transplant centers have been labeling some patients “too sick to transplant” and dropping from the wait list some who may have been viable candidates, according to a report by Michelle Andrews (Kaiser Health News).
Recommended Reading: What You Can Do to Get on the Kidney Transplant Waiting List After Being Rejected
Yes, a study published in the Journal of the American College of Surgeons speculates that when the federal Centers for Medicare & Medicaid Services (CMS) implemented a new “Conditions of Participation” policy that established survival-rate standards for transplant centers it caused some centers to become more "averse to risk and encouraged them to drop sicker patients who might affect their patient survival rates."
Although the study focused on liver transplants, results suggested that the policy also impacted kidney, heart, heart-lung, intestine, lung and pancreas transplant centers that participate in the Medicare program. In fact, Kurt Schnier (Economist, the University of California at Merced) examined the impact of the CMS policy on kidney transplant practices and noted that "the standards have [also] lengthened the time patients are on the wait list," and "affect surgeon behavior" according to Californiahealthline.org.
Transplant centers that do not meet the CMS one-year survival performance standards may be flagged for poor performance and have to implement program improvements or risk their participation in the Medicare program. “There’s no common definition for when someone is too sick to transplant,” said the study’s lead author, Dr. Natasha Dolgin. Yet, patients who were taken off of the waiting list after the CMS policy change were more likely to be 55 or older and have a more severe illnesses. However, those reasons don’t explain the increase in delisting (removal of a patient from waiting list) following the introduction of the CMS policy, according to the study.
Recommended Reading: ESRD Patients Who Work Full-Time Are “Much More Likely” To Receive Kidney Transplant
In theory, the goals of the CMS policy were well intentioned to help improve survival outcomes. On the other hand, in application these policies seem to create "perverse incentives at the physician level that may undermine the personal welfare of the general population,” said Dr. Dolgin. Moreover, the Journal of the American College of Surgeons study found that the new CMS standards did not offer a significant impact on mortality rates within a year of transplantation.
Thankfully, CMS is beginning to ease this policy. Still, Chronic Kidney Disease and Dialysis patients who are delisted should not give up. Talk with your Healthcare Team about the reason for your removal from the list, and identify other transplant centers in your region for which you may apply. Never lose hope, and continue to share your story with as many people as possible as some may consider the idea of altruistic (kindhearted) donation. Click here if you need help sharing your story. Also, complete the below form to get a full list of the top transplant centers across the United States.
What do YOU think? How do you keep yourself active on the list? Do you have any unique tips and insights to share? Have you ever been delisted? How were you relisted? Leave a comment for the nearly 41,000 KidneyBuzz.com Facebook Friends. Like the page while you are there. Visit KidneyBuzz.com daily (well over 1.2 million yearly viewers) for breaking news and information which teaches those with Chronic Kidney Disease, Dialysis, Kidney Transplant, Diabetes, and High Blood Pressure how to better manage and improve their lives.