National Living Kidney Donor Registry to Be Launched in US

Pam Harrison

November 14, 2019

The first national living donor registry for kidneys is soon to be launched in the United States by Donate Life America who, in partnership with the Fresenius Medical Care Foundation, plan to have it up and running in 2020.

"On average, about 17 people in the US die every day waiting for a life-saving kidney transplant," David Fleming, president and chief executive officer of Donate Life America, told Medscape Medical News.

"So we are obviously not meeting the demand for life-saving kidney transplants now, and one of the primary ways we are going to promote this living donor registry is to simply offer it to individuals who are already coming through our current registry system. [We will] give them the opportunity to get more information about living donation and have them receive an at-home test kit to get their human leukocyte antigen (HLA) and blood type done," he explained.

The National Donate Life Living Donor Registry is planned as an undirected registry, meaning that people will be donating an organ anonymously to a matched recipient on the waiting list.

However, organizers will welcome any individual who is planning to donate a kidney to specify a named recipient, a process known as a kidney paired donation, which already exists in some places in the United States, as well as Canada and other countries.

"Having said that, if an individual is not a match for a named person, we will ask permission to see if they are a match for someone else who is waiting for a kidney," Fleming noted, "even though we anticipate most people will be altruistic, [there are] nondirected donors who just want to help someone in need," he added.

"Many of us think there is an opportunity to grow living donation here, although honestly, I think that opportunity is bigger in places like Canada where there is a national healthcare system and you know that someone who is going to donate a kidney will get whatever care they need," nephrologist Peter Reese, MD, told Medscape Medical News.

"But there has never been a national campaign to promote living donation the way you see for blood drives, for example, so maybe this living donor registry is a way to step into this gap and say, 'Let's give people a way to express their interest without having to go to a particular transplant center to do it,'" suggested Reese, of the University of Pennsylvania, Philadelphia.

The pilot launch of the living donor registry and accompanying at-home test kits will be rolled out in select markets through February 2020, followed by national implementation throughout the rest of the year.

Process Will Speed Up but Requires Generous Citizenry

How generous the citizenry of the country actually will be is one of the questions that the living donor registry will ultimately answer. Right now, it would not seem that citizens in the United States are as generous as the partners behind the new registry might need them to be.

In 2016, for example, just 28% of kidneys transplanted into US patients with end-stage renal disease were from living donors.

In fact, donation rates from living donors have actually declined from the early 2000s, despite the increasing needs for donor kidneys.

This has meant that the waitlist for a kidney — mostly deceased donor kidneys — is impossibly long.  

Right now, for patients in the US waiting for a kidney transplant, the median wait time is at least 4 years, and it can be considerably longer depending on where the patient lives and their blood type.

Out of about 100,000 hopeful patients currently on the waitlist, only about 20,000 are in line to get a donor kidney this year.

In theory, having a living donor registry should help considerably whittle down the waiting process.

As Reese explained, deceased donor kidney transplants in the United States and elsewhere are basically a "public good...like a national park, so there's a waiting list and people need to get in line until one is available, and that wait can take a long time," he told Medscape Medical News.

Organs from living donors, on the other hand, are generally a private gift from one person to another, often from a brother to a sister, or a wife to her husband, but increasingly they come from individuals who do not have a blood relationship to the recipient, he added.

This means that when a living donor is ready to donate and a match is identified in the recipient waiting pool, "you are able to immediately schedule a conversation with a transplant center, so the process is greatly speeded up," Fleming said.

In fact, "there may be no wait at all. You can sometimes avoid dialysis altogether with a living donor," Reese observed.

Donate Life America: Registry Will Double Number of Matches in a Year

This is why the two partners in this venture — Donate Life America and the Fresenius Medical Care Foundation — are hopeful they will meet their stated goal of doubling the number of successful matches within 1 year of launching the new registry.

Already, most of the pieces are in place that will help them get the registry up and running next year.

They have, for example, plans to send at-home test kits to potential donors so that they can take a saliva sample and send the sample to transplant centers who can then start to match donor blood and HLA types with potential recipients.

"The streamlined screening process will help retain living donor interest by converting test results to a potential match as quickly and safely as possible," the organizations elaborate in a press statement.

Only the transplant center will know the results of these at-home tests, as Fleming emphasized — so potential donors themselves will not know their results.

"The other thing that is very important in this is that any medical decision about whether or not the individual is a match, or whether it is even safe for them to proceed as a living donor, will be determined by further detailed testing by the transplant center," he added.

Kidney Paired Donation Can Lead to "Domino" Chain of Transplants

Just how much more streamlined the transplant process can be is well illustrated by the experience reported by the Kidney Paired Donation program in Canada.

Launched in 2009, "the success of the program can be attributed to the selflessness of hundreds of individuals who have stepped forward to be living organ donors," Kathy Yetzer, associate director of living donation, Canadian Blood Services, Edmonton, Alberta, explained to Medscape Medical News.

These anonymous donors are initially assessed by their local donation programs to ensure they are healthy enough to donate, after which "match cycles" are initiated by the organizers three times a year.

"If these nondirected anonymous donors match a transplant candidate in the kidney paired donation program, they can start a 'domino' chain of transplants that can be up to six transplants long," Yetzer explained.

This means that the donor of the last pair in the domino chain donates to a patient on the transplant waitlist who does not have a living donor; the more nondirected anonymous donors who participate in the match cycle, the more opportunities there are to find matches for incompatible pairs in the program, she elaborated.

Over the past 10 years, the kidney paired donor registry in Canada has enabled half of enrollees to receive a living donor transplant, with 75% of transplants happening within the first year of enrolment. 

"Kidney transplants from living donors are the best therapy for end-stage renal disease," Yetzer said. "On average, living donor kidney transplants last much longer than kidneys from deceased donors," she explained.

Receiving a kidney transplant can also more than double a recipient's life expectancy compared with remaining on dialysis and greatly enhance quality of life.

Over the years, Yetzer has also learned that sharing stories about patients and their living donors raises public awareness about living donation and helps motivate more people to donate.

And in an ethnically diverse population such as Canada's, making information available in multiple languages that is presented plainly and simply is also essential, she added.

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