Proposed rule shift would benefit some kidney patients on waiting list for transplant
Dialysis patients who were not informed about kidney transplant possibilities could move up on the waiting list through a proposed rule that would give credit for time spent on dialysis.
The proposal addresses a long-standing problem: The failure of doctors and dialysis clinics to disclose that a kidney transplant could add about 10 years to a patient's life.
“Patients often get referred late for transplant,” said Dr. John Friedewald, a transplant nephrologist at Northwestern Memorial Hospital in Chicago and chair of the Kidney Transplantation Committee of United Network for Organ Sharing. “Getting a transplant sooner is better. We realized that some patients were being underserved because they weren't being referred before they started dialysis.”
A 2009 Tribune-Review investigation found that nearly a third of the more than 105,000 people just starting dialysis in the United States were not informed about transplantation.
The proposed rule change is part of a broader policy review of kidney allocations by UNOS, which oversees allocation of transplant organs in the United States. Kidneys are by far the most needed organ with more than 93,000 people waiting for kidney transplantation nationwide. About 10 percent of those candidates die each year while waiting.
The proposal calls for waiting time priority for candidates to begin when they start dialysis or meet a medical definition of end-stage kidney failure.
“The best thing for a dialysis patient is to have hope for a kidney,” said Warren Whitlock, 55, of Fairywood. He underwent kidney transplants in 1995 and 2005 and awaits a third one.
During his first experience, it took about five months to get information about transplantation.
“Patients need to be informed about everything before they even start on dialysis,” Whitlock said. “You might have a family member who might want to donate a kidney and you don't have to go through dialysis.”
A formula would rank transplant candidates based on how long they are expected to live with a new kidney.
The ranking would take into consideration age, length of time on dialysis, history of diabetes and history of prior organ transplant.
Similarly, a so-called kidney donor profile index would calculate an estimate of the longevity of each kidney donor. The index would utilize 10 factors about the potential donor, including age, cause of death and kidney function.
Hospitals would use the formula only for the top 20 percent of patients expected to have the longest need for transplants. Those candidates generally outlive a transplant and are forced to undergo another transplant, Friedewald said.
“When people live longer with the existing organ transplants that we have, it effectively makes more organs available for everybody because we have fewer returns to the wait list,” he said.
The proposed policy avoids what Friedewald called “extreme mismatches” of organs and recipients. For example, an 80-year-old recipient would not get an organ from a 20-year-old donor that presumably would last longer than the recipient would live.
Giving dialysis patients credit for treatment should help minority patients who generally have a lower chance of getting a kidney transplant, said Dr. Sundaram Hariharan, medical director of kidney and pancreas transplantation at UPMC. He underscored the importance of an early transplant evaluation because duration of dialysis — which uses a special machine to filter waste and excess fluid from the blood — influences the transplant outcome.
“The shorter the dialysis, the better the transplant outcome,” Hariharan said. “The longer they're on dialysis, the poorer the outcome.”
Dr. Ngoc Thai, director of Allegheny General Hospital's center for abdominal transplantation, called the allocation policy flawed because it is impossible to predict how long a patient might survive after a transplant based on only four factors. Thai said the factors should include the transplant candidate's history of cardiovascular disease.
“Most patients die after kidney transplant from cardiovascular disease, and it's not even in there,” he said.
UNOS says it could not consider cardiovascular disease as a factor because the data are not available.
Thai said using age as a factor to determine post-transplant survival amounts to age discrimination because someone who is 65 is not necessarily less healthy than someone age 50.
Freidewald said no policy will satisfy everyone.
“There's a massive shortage of organs,” he said. “We're never going to please all those people who don't get a transplant. What we're trying to do is for people who do get an organ to make the most of it.”
UNOS will accept public comments on the policy through Dec. 14. The UNOS board cannot consider a final proposal until its June 2013 meeting.
Luis Fábregas is a staff writer for Trib Total Media. He can be reached at 412-320-7998 or firstname.lastname@example.org.