More donors needed

The United Network for Organ Sharing, known as UNOS, has a fairly low-key presence in its Richmond headquarters where it manages a round-the-clock nationwide network matching donor organs with those in need of transplants. But it’s about to make a big decision that could affect the lives of thousands of people around the country.

Right now, patients needing kidney transplants generally get on a list kept by UNOS and wait their turn.  The wait can take years because of a chronic shortage of donor organs. In June, though, the UNOS board will consider a new policy that would give some of the best kidneys to those patients judged most likely to live the longest after transplant.

That’s good news if you’re a younger person in need of a healthy donor kidney, but not good news if you’re an older and possibly weaker transplant candidate. A UNOS committee —  about two dozen people, most of them transplant physicians —  approved the proposal unanimously in November after about eight years of study and revision.

The new concept is “longevity matching,” says Dr. John Friedewald, chairman of the UNOS committee and a transplant nephrologist at the Northwestern Memorial Hospital in Chicago. “It strives to first allocate organs that we think are going to last the longest to those recipients who we think are going to live the longest,” he says.

The new approach wouldn’t apply to all deceased-donor kidneys, just the top 20 percent. It should make a big difference, Friedewald says. “We’re anticipating an increase of over 8,000 extra life years gained from the same one year’s [supply] of donor kidneys.”

Of course, the better solution would be having more donor kidneys, but the gap between supply and demand has greatly widened in the past 25 years. In 2010 (the most recent year for which figures are available) 16,843 kidney transplants were performed in the U.S., and 75,807 people were on the waiting list. The list is growing. As of late March, 95,688 people in the U.S. were waiting for kidney transplants, including 2,655 in Virginia.

People are living longer
Ironically, a key reason for the shortage is better health care. “The explosive growth has really been in older patients,” Friedewald says. “As people live longer, they don’t die of other things, so they live longer and can get kidney disease.”

Kidneys are by far the organ most in demand, accounting for 82 percent of the patients seeking organ transplants. Livers are second in demand, followed by heart and lung transplants. “The point is, although a waiting time seems fair, not everybody has the same ability to wait on dialysis,” Friedewald says.

Despite the expected benefits, the new concept makes some in the field wince. Dr. Amy Friedman, for example, supports the change but reluctantly. She is the director of transplantation at SUNY Upstate Medical University in Syracuse, N.Y., and a member of the board of directors for the American Association of Kidney Patients (AAKP).

“It’s so complicated that any system that we’re going to design simply isn’t going to seem fair to everybody,” she says. If the proposal “was solely to make a change that completely disadvantaged the elderly, then I would be opposed. But this one doesn’t.” AAKP leaders “recognize that there simply isn’t a better system, other than doing everything that we can to increase the organ supply,” she says. “AAKP is not unrealistic about which patients can and can’t be transplanted.”

Nonetheless, Friedman and others see ways this change could force difficult choices. If older patients are given less access to better donor kidneys, then they might end up with no transplant at all. “The truth is that for some of the elderly patients, we may opt not to transplant them, because they may need a really good-quality kidney to get through the transplant,” Friedman says. “If I don’t have such a good-quality kidney, I may well shy away from doing the transplant. That’s just the way it is.”

Older patients already often have to convince transplant surgeons that they’re good candidates, an effort that can be painful to witness, she says. “Your heart simply breaks,” Friedman says. “I literally have people who come to see me in the office. I see that they’ve put on their finest, they’ve put make-up on or done their hair, and they sit there with good posture because they’re trying to sell themselves to me as good patients.”

She still has to make a fair assessment of their chances. “I know that I will not have a kidney for all of them” because of the chronic shortage of organs, Friedman says. So the new proposal, though it might be painful to impose, is necessary. “This is what the involved community has decided, and I can’t think of a better way,” she says. “If you look at it big picture, it is in society’s best interests. But when you look at it from the patient’s perspective, it’s not a good thing.”

Opt out rather than opt in
Dr. Ravinder Wali, a nephrologist from the Transplant Center at Inova Fairfax Hospital, also is concerned that the new policy could “marginalize those who are a little bit up in age, at the 50s, 60s and 70s. I think that’s what the debate is about.”

What he would really like to see is a change in how organ donors are recruited. Wali supports changing the “opt in” policy in the U.S., meaning individuals or their families have to volunteer donations. Other nations, including European nations such as Spain, Belgium and Austria, have an “opt-out” policy, making everyone a potential donor. “The average wait [in the U.S. for a deceased-donor organ donation] can be three to seven years,” he says.

Data show that about 18 people in the U.S. waiting for an organ donation die every day, a figure that has increased as the number of eligible recipients has risen. But the rate of donations has remained relatively flat. “How do you divide these precious resources in a very meaningful way so that we get the best life years out of this?” Wali asks.

In hopes of increasing the supply of donated organs, Friedman has broached the idea of making it legal in the U.S. for living donors to sell a kidney, “It’s very known that the black market is unsafe for donors, for recipients,” she says. “What we are in favor of is at least a trial of [financial] incentives for donors, to see whether it might improve their interest and willingness to donate organs.”

Friedman says many transplant surgeons would like to see living donors made eligible for lifelong health insurance, through Medicare or some other government-backed health insurance program. She notes that currently, when a person agrees to donate a kidney, everybody else involved in the transplant “has some tangible benefits.” The doctors get paid, the hospital gets paid, and the recipient gets a new kidney. “The only person who doesn’t have any type of tangible benefit is the donor,” she says.

Virginia transplant centers
Virginia has seven active transplant centers. The busiest is the University of Virginia Health System, with 3,835 transplants from 1988 through 2012, according to data from the Organ Procurement and Transplant Network (OPTN). U.Va. is followed by the VCU Health System, Inova Fairfax Hospital and Sentara Norfolk General Hospital. During the same period, there were 13,299 organ transplants in Virginia, 58 percent of which were kidney transplants, according to OPTN.

The process of developing the new kidney transplant proposal has lasted about eight years. The committee that drafted the proposal was scheduled to meet again in April to review public comments it received during the past few months and then make adjustments if necessary. Friedewald declined to give specifics on what commenters thought about the proposal, just saying that “in general we thought it was very good, very constructive in some areas, and we can make minor tweaks” to the proposal before the UNOS board considers the proposal at its June meeting in Chicago. “It’s taken us awhile to get here,” Friedewald says. “We’ve tried to be very responsive to public comment, and I think we have been.”

This proposal represents a significant change, but it would take effect in a relatively conservative way, Friedewald says. “We think that, for a lot of people, it won’t make a huge difference in how they get through the system and get to a transplant, honestly. And we did that on purpose.” Just 20 percent of donor kidneys and recipients are directly affected, he says. “For the other 80 percent it’s going to be pretty much as it is now.”
If the proposal is approved, the process of implementing begins, “which is not trivial,” Friedewald says. If the results are good it’s possible UNOS could expand beyond 20 percent, but first it has to be tried on real patients. “We do very complex simulations and have a lot of faith in our statisticians, but obviously you gotta play the game. And yes, going forward, we can imagine increasing or decreasing that number,” Friedewald says.

He concurs that the best solution is more donors, both deceased and living. “We may have the best new allocation policy in the world, but it doesn’t change the fact that more people are dying without kidneys,” he says. “Unfortunately, the list keeps growing, and the [number of] donors have remained fairly flat. The trend is not subtle. We don’t see this problem going away any time soon.”