Eloise Susa faced waiting five to 10 years for a kidney transplant, but she got one in two and a half years.
Lauren Chapman received a kidney from a relatively healthy 29-year-old donor.
“I hope it will last the rest of my life,” said Chapman, 30, of Madison.
Chapman and Susa, 32, of Greenwood, near Marshfield, benefited from a new national kidney allocation system that started in December.
The old kidney system was mostly first-come, first-served. It distributed deceased donor organs to patients who waited the longest, even if recipients were relatively old and frail and donors were young and healthy.
The new system emphasizes “longevity matching.” Age and medical criteria are used to give each kidney and recipient a score, and the top 20 percent of kidneys go to the 20 percent of recipients expected to use them the longest, such as Chapman.
“We want to make kidneys last longer,” said Dr. David Klassen, medical director for the United Network for Organ Sharing, or UNOS, which runs the country’s transplant system.
The new system also helps patients, such as Susa, whose blood type or immune system makes it especially difficult to find matching donors.
The system doesn’t address geographic disparities in median wait times for kidneys, which vary from about a year in some parts of the country to more than six years in other places. Transplant officials plan to tackle that in the next few years, Klassen said.
While the new allocation system has several groups of “winners,” it also has “losers” — primarily older people, who might have to wait longer for transplants or accept lower-quality kidneys, which can still be preferable to staying on dialysis.
Older patients “don’t fare well in that estimated post-transplant survival picture,” said Dr. William Bry, a transplant surgeon at California Pacific Medical Center in San Francisco.
UNOS wanted to use “age-matching,” but age discrimination concerns from the Justice Department and groups including AARP led to longevity matching. The latter incorporates age, time on dialysis, previous transplants and whether patients have diabetes.
Since the new system began Dec. 4, transplants in patients age 50 and older dropped from about 62 percent of all recipients to 53 percent, and transplants in patients ages 18 to 49 increased from roughly 33 percent of all recipients to 43 percent.
Kidneys still wasted
Nationwide, nearly 102,000 people await kidneys, more than 62,000 of them in active status, meaning they could receive an organ today. About 17,000 people got kidney transplants last year and 4,300 died waiting.
The new system helps patients who had to wait much longer than others for kidneys because they don’t match most donors.
One group is people who develop high levels of immune system antibodies from pregnancies, blood transfusions or previous transplants. They typically had to wait five to 10 years or more under the old system to find matching donors in their local areas.
Another group is recipients with type B blood, who are also harder to match.
Now both groups get priority in the national donor pool, and many are receiving transplants from donors in other states. Those with the most antibodies have accounted for 16 percent of transplants since Dec. 4, up from less than 3 percent before.
“There’s an explosion of kidneys going around,” said Dr. Dixon Kaufman, transplant chairman at UW Hospital, one of the country’s largest transplant centers.
Black patients now get 38 percent of transplants, up from 32 percent before. There’s a slight uptick for Hispanics and a decline for whites.
The new system hasn’t solved a persistent problem: wasted kidneys. More than 2,600, or nearly one in five recovered from donors, are discarded each year, partly due to damage but also because some aren’t allocated in time. The discard rate remains about 19 percent.
Geography a problem
While the new allocation model doesn’t address geographic disparities in wait times for kidneys, that is a priority, Klassen said.
In 2012, the UNOS board said the “existing geographic disparity in allocation of organs for transplant is unacceptably high” and called for “optimized systems” to reduce the gaps.
Doctors in places with the longest wait times for kidneys say the problem should be dealt with soon.
The median wait time in Chicago is more than six years, compared with a year and a half in Madison. For patients with kidney failure, the five-year survival rate on dialysis is about 36 percent, compared with 86 percent for those who get kidney transplants, according to the National Institutes of Health.
“It’s really not a good outlook for transplants in this city,” said Dr. Paul Crawford, a nephrologist on Chicago’s south side. “The system needs to change.”
For organ transplants, access differs across the US
How long patients wait for kidneys and how sick patients must be to get livers varies by area.
A research group at Northwestern University, which has a transplant center in Chicago, proposed a solution called KSHARE.
Under the model, when transplant centers decline lower-quality kidneys, the organs would go to nearby centers and selected national centers with long wait times instead of being offered anywhere regionally or nationally.
If UW Hospital passes up such a kidney, for example, “give it to Chicago,” said Sanjay Mehrotra, an industrial engineering professor at Northwestern who helped develop the model.
“If Madison gives that organ to Chicago, it solves the disparity problem,” Mehrotra said.
Kaufman, of UW Hospital, said more organ donation would also help.
About a third of kidney transplants at UW Hospital and around the country are from living donors, but there is room for more. Kidneys from living donors typically function better and last longer than those from deceased donors.
“They’re the Cadillac of kidneys,” Kaufman said.
New lease on life
Susa was happy to receive any kidney, including the one she got from a deceased donor.
She was diagnosed eight years ago with lupus, an autoimmune disease that attacked her kidneys. A mother of two girls, ages 9 and 3, she had two blood transfusions during her most recent pregnancy.
She developed high levels of antibodies. When Susa went on the transplant waiting list at UW Hospital in August 2012, several months after daughter Ava was born, staff told her she might have to wait up to 10 years for a transplant, she said.
She did dialysis, driving half an hour to Marshfield every Monday, Wednesday and Friday morning for the nearly four-hour blood cleansing treatments.
Dialysis left her listless and unable to engage Ava and her older daughter, Adriana. “They’d want to play, and I’d want to do nothing,” she said. “I’d tell them I was tired, but they didn’t understand why.”
Shortly after Thanksgiving last year, she received a letter with promising news: a new kidney allocation system might help her.
Three weeks later, she got the call for a kidney. “I wanted to scream,” she said. “I ran upstairs and told the girls, ‘Let’s go!’”
Today, Susa is fishing, cooking out and playing in the yard with her daughters. Free from the limitations of dialysis, she and her husband plan to visit a friend this summer in Virginia.
“I feel awesome, energetic,” she said.
Chapman had her transplant at UW Hospital in late February, five years after she went on the waiting list in Milwaukee before signing up in Madison last year.
She was close to graduation at UW-Oshkosh in 2009 when kidney failure forced her to drop out, move home and start dialysis. She had developed gout, a painful form of arthritis that apparently affected her kidneys.
On days when she didn’t have dialysis, she worked at Target. On dialysis days, “I’d be so tired afterward, I’d just sleep the whole day,” she said.
Now, two months after her transplant, Chapman is back to work and plans to return to school soon.
She has high hopes for the high-quality kidney she received under the new system. “They’re supposed to give you a full life,” she said.