WRAL Investigates

Kidney transplant wait times in NC vary by center

Posted November 24, 2015 5:45 p.m. EST
Updated November 24, 2015 6:16 p.m. EST

— More than 100,000 people in the U.S. are waiting for a kidney transplant, according to the Scientific Registry of Transplant Recipients, and that wait can often take years. In North Carolina, there are dramatic differences in wait times among the five organ transplant centers in the state.

By law, all transplant centers in the U.S. must report information on transplants they do. WRAL Investigates reviewed the public data and found that, from 2009 to 2014, the most recent data available, Duke University Hospital and UNC Hospitals had the longest median wait times for a kidney – six years or more.

Carolinas Medical Center in Charlotte also has about a six-year wait. However, the median wait time at Wake Forest Baptist in Winston-Salem and Vidant Medical in Greenville was a little over three years for a kidney.

WRAL Investigates reached out to the five transplant centers in the state for their explanations about the different waiting times and how new rules will impact the wait. Read their detailed responses:

Waiting for a kidney

Andy Auman, of Aberdeen, does dialysis at home every night and waits for a call every day, hoping to hear a kidney is available. He has been waiting for that call for more than three years.

Auman, 65, is listed at Carolinas Medical Center because he says his doctor told him it had the shortest wait time in the state. But WRAL Investigates found that's not the case.

According to data collected by the Scientific Registry of Transplant Recipients, the wait could be six years or more at Carolinas Medical, Duke or UNC, compared with three years at Wake Forest Baptist Medical Center.

Dr. Bob Stratta, organ transplant director at Wake Forest Baptist Medical Center, says the shorter wait time is partly because the center accepts donor kidneys other centers might turn down.

“We tend to turn over a lot of elderly patients, because we’ll use kidneys from elderly donors, and we’ve had good results and it makes sense and it’s logical,” he said. “So, we can turn over that part of the waiting list fairly quickly if people are willing to consider an organ from their own age group.”

At Duke Medical Center, they accept patients with other issues that may take longer to get transplant-ready.

“We are very good at Duke with high body-mass index patients, patients with complex cardiac histories, because we have good cardiac follow up,” said Dr. Matthew Ellis, Duke’s medical director of kidney and pancreas transplantation. “We transplant patients with HIV and sickle cell disease. Some other centers don’t.”

UNC says it also lists patients with complex medical histories. At times, many are listed as "inactive," meaning they have to get healthier before undergoing a transplant. But they're still on the list, and that can extend a center's median wait time.

Last year, Auman found his wait might not be much longer. He got a letter from Carolinas Medical Center, telling him he was in the Top 10 for his blood type.

“My daughter says, ‘That was the first time I’ve ever seen you cry,’” Auman said. “It was not true, but that’s what she thought.”

But at a recent physical, Auman's doctor told him he was no longer in the Top 10 because of policy changes governing transplants in the U.S. For decades, allocating organs was based primarily on how early a patient got on the waiting list. The old system did not take into account the quality of the kidney or how long the patient would be able to use it.

“There was a very strong push in the past five, 10 years to say, can we allocate kidneys in a way that would get the best kidney to the person who can use it the longest?” said Ellis.

Each kidney that’s donated gets a score based on its quality and how long its expected to last, according to Ellis. The best quality kidneys are put it into the people who will use them the longest. So, recipients also get a score that tries to determine how long they will live with the kidney they will be given.

'If you don't do it, you die'

The United Network for Organ Sharing, or UNOS, implemented new rules in December to help make allocating organs across the country more fair and help even out wait times.

The big changes include giving donated organs a score and the recipient a score for better matches. Also, getting time credit for dialysis prior to getting on the transplant list. That may be a credit of months or years, moving those newly listed patients up and moving patients like Auman down.

"My disappointment is that they’re moving seniors back, and, of course, I’m in that category,” Auman said. “I understand the fairness issue, and I think they’re trying to do the right thing. I think that with every other program, or when you’re starting a program up, there are winners and losers.”

Ellis understands that disappointment and says the change has “caused great consternation for the older patients and the community in general.”

However, the change in waiting time for a 60-year-old, for example, “has not gone from five years to 10 years. It’s gone from five years to five and a quarter years. So it prolonged it, but not in a huge amount of time,” Ellis said.

In the meantime, Auman continues to wait for the call that a kidney is available that will ensure more years with his family.

“It is a black and white issue. There’s no gray. You either do this or you don’t do this. And if you don’t do it, you die,” Auman said. “I’m not interested in doing the death part thing right now.”

The best way to get a kidney is through living donors, because their kidneys last twice as long as deceased donor kidneys. North Carolina has the sixth largest donor registry in the country. About 4.7 million North Carolinians have said yes to donation on their DMV license.

To register to be a kidney donor, visit Carolina Donor Services.