Nicole Turgeon, MD at Emory University School of Medicine talks about kidney transplants and the donor voucher program.
Interview conducted by Ivanhoe Broadcast News in March 2019.
Can you tell me about the kidney donor voucher and how it started?
NICOLE TURGEON: The kidney voucher program started as a result of one of the donors wanting to give a kidney to his grandson, but he was unable to do so because his grandson didn’t need a kidney yet. He came to the transplant center in California and asked why he couldn’t be a donor in advance for when his grandson needed a kidney. He mentioned that by the time his grandson would be eligible to get a kidney he would probably be too old to give him it and he wouldn’t be healthy enough. That’s what the genesis of the voucher program is. I think the strength of the program is that it allows people to donate their kidney to loved ones or close family friends who don’t have kidney failure right now but may develop it in the future because they may have some kidney disease that we’re aware of but they don’t need a transplant. The voucher allows these potential donors to be able to give their kidney when they’re in a good place in terms of their health or maybe even a good place in terms of their life and what’s going on with work or other obligations. They then become a donor in advance by getting a voucher for their particular intended recipient and when that recipient needs a kidney transplant, they will receive it through the National Kidney Registry.
Do all hospitals that transplants that take part in have this? Or are there certain hospitals?
NICOLE TURGEON: The program is currently offered through the National Kidney Registry and all hospitals that are interested may participate in it if they are member centers at the National Kidney Registry. Right now, they’re piloting an additional program where they’re looking at giving those potential donors five family members that they can list as potential recipients for a voucher; in addition to doing it for those who have potential kidney failure right now and just identifying that one person. There may be some additional benefits to a program like this that can be extended through the National Kidney Registry.
A transplanted kidney doesn’t last forever. Will the vouchers also be good for the second time that they need a transplant?
NICOLE TURGEON: The voucher would be for one of those five individuals that you list; once that voucher is used, it negates the use of the it for another person on that particular list of five potential recipients. We wish we could have enough kidneys for all five of those people if they needed it, but it’s unlikely that many of the people on the list will ever need a kidney. However, in the event of needing one, this gives donors comfort in being a donor and knowing that their loved ones will be taken care of; it may not be with their kidney, but it will certainly be with another kidney from a donor just like them. I think that is the power of the advanced donation program that allows people to use vouchers because it gives donors the ability to do it as I mentioned in the timeframe that’s suitable for them and a time frame when they’re healthy, and it also gives them peace of mind that their loved ones or someone they know with kidney failure will get a kidney in the future when they’re ready for it.
Does the donor get to list five people that could be potential recipients of their kidney?
NICOLE TURGEON: Yes. The voucher program has two components, one of which is a pilot called The Family voucher program, where you can list up to five family members or close loved ones and once that one person on that list receives a kidney, that negates the rest of the people on that list from receiving a kidney. The second one is the system where you donate a kidney to someone who has kidney disease but may not have kidney failure or is in close need of needing a transplant but maybe doesn’t need it right away. This is where you list one person, and that one person will eventually get a kidney when they are eligible and ready to receive it.
What are the advantages or benefits to someone going through this?
NICOLE TURGEON: The advantages are that you can give your kidney knowing that someone on your list of five loved ones will potentially receive a kidney in the future that is a living donor kidney. Living donor kidneys last longer and can be scheduled. As a donor, you can do this in a time frame which is better for you; you can do it when you’re healthy and not wait until your loved one or family member needs that kidney. If Jamie, in particular, waited an additional 10 years, she may not even be eligible to be a donor based on her kidney function in that timeframe, or maybe her health would change in that time frame. This is powerful because it can allow folks to still be a donor – which may not be in the timeframe – they can do it now and their loved one or intended recipient can receive their kidney when they need it.
Is there a time span difference between someone that’s been through the voucher program compared to someone who has to wait for a deceased donor?
NICOLE TURGEON: Once the intended recipients, whether it be a family voucher or through someone who has kidney failure, is deemed ready to receive a kidney transplant, the registry will then activate, and they will start receiving offers. That timeframe can vary, it can be as short as one to two months or it can be up to a year or two depending on the category of the recipient. There are many factors, such as blood type and if you have antibodies in your blood, that go into eligibility and being able to receive the kidney through the registry in order for them to receive kidneys quicker. Getting a living donor kidney is much quicker than getting a deceased donor kidney, even if you’re in the voucher program and using paired exchange through the National Kidney Registry or any other paired exchange programs. Things such as blood can make it either quite easy to match them with other donors or it can make it harder in general, even those timeframes are significantly shorter than you would have to wait for a deceased donor kidney; you could wait anywhere from a couple of years all the way up to eight and 10 years, maybe even longer for deceased donor kidneys. We always highly recommend that people find living donors if possible because those kidneys last longer and can also be received much quicker than with deceased donors. We also mention that while you’re on the deceased donor waiting list, you don’t get better; you get sicker, meaning there’s a chance you may not even be eligible for a kidney after waiting. These are the reasons why we strongly recommend living donation, and this voucher program is another facet in living donation where we can help donors take that leap if they’re concerned that their loved one is going to need the kidney in the future, and they want to save that kidney for them but they may not be as good of a donor later in life because of health. The voucher allows us to tell them they can donate a kidney in the timeframe that’s good for them and their health and we’ll take care of their loved one in the future if they ever need a kidney. We’re hoping that the voucher allows people to feel more comfortable about being living donors if they’ve had that thought in the past.
With this program, the only other way that someone could get a living donor donation would be somebody that you have to know.
NICOLE TURGEON: Yes. There are many ways to get a living donor kidney and it’s often through people you know from work, church, sporting events, or other activities you may do. People also often find donors on Facebook and other social media platforms. We’ve also had donors take nice pictures with their families and put billboards up saying they need a kidney, or they make bumper stickers. There are various ways that people try to find living donors that may not be related to them. However, even if you find living donors that are friends, family members, or through other social media avenues, their blood types or tissues may not match you and you may reject their kidney. The National Kidney Registry or any other paired donor exchange program will allow you to find a kidney that matches you; your donor gets to donate to someone else and someone else’s donor gets to donate to you. This allows everybody to win and get a living donor kidney and avoid a long wait on the deceased donor waiting list. What the voucher donors do is allow chains to start; they do what’s called a domino transplant where they start the chain and then they donate to a recipient, that recipient’s donor then donates to another recipient, and so goes the chain. The voucher is an incredible way for us to increase the number of transplants that we’re doing and for people to get living donor transplants, which last longer. This also helps patients who are suffering on dialysis or close to being placed on dialysis.
Can you tell me a little bit about Jamia and Deli’s story and how they came to you?
NICOLE TURGEON: Jamie contacted us and said she was interested in being a voucher donor. She had read about the program and wanted to know if we would help her achieve that goal, so we contacted the National Kidney Registry. She had a wonderful granddaughter for whom she wanted to be an advanced donor and so she could receive a voucher. We brought her through our process and thankfully she was a great candidate to be a donor. She underwent her surgery and did very well. She continues to do well and Delly is not ready to receive a transplant yet, which is fantastic. We’re hoping to avoid her needing a transplant for as long as possible because we know that she’ll probably need more than one transplant in her lifetime based on her age. It was a powerful experience for all of us; I got to meet her family and we really enjoyed the experience of having her be our first voucher donor.
What is the takeaway message for people watching this? What do you want them to know?
NICOLE TURGEON: We want people to know that there is a program for them to be a donor and help other people, and in return, we will help them and their loved ones in the event that they need a kidney in the future. The human spirit is amazing. I work with such incredible donors every day and they humble me. The fact that they want to be a kidney donor and have a surgery they otherwise wouldn’t have to have, tells us how much good is out there. We hear so much evil and so much discontent, but people are generally incredibly giving, loving, and good. This kind of experience is one that I think people should have, and if they want to donate a kidney, we can help them achieve that.
If for some reason the donor’s other kidney fails or something happens in the future, would they be automatically placed on the living donor list?
NICOLE TURGEON: Yes. We take care of the living donors and they would receive eligibility and priority for a kidney transplant in the future. We hope we never have to cross that bridge even though we have had to from time to time. The goal of this is to have the donor have a long, healthy life with their one kidney.
Would this chain be able to apply to other transplants like live liver donations?
NICOLE TURGEON: I don’t think that it would necessarily be possible at this point because it is not a common procedure and there is increased risk with liver transplant. I don’t think we’re there yet, but you never know.
What has been the longest chain that you guys have done?
NICOLE TURGEON: Emory was a part of a chain where there were 62 transplants. It was very exciting to be part of that.
Is there anything else that you think people should know?
NICOLE TURGEON: There are over 100,000 people on the kidney transplant waiting list, and with waiting times for a deceased donor, a waiting list can range anywhere from two to 10 years. The need is tremendous and that’s why we encourage our patients to find living donors if possible, and we encourage anyone who’s interested in being a living donor, to come forward and visit our website or any transplant center’s website to learn more information about how to be a living donor. We’re very careful in our selection; we want to make sure that people are going to live a long, healthy life with one kidney. Therefore, we will never let anyone be a donor if we don’t think it’s in their best interest.
END OF INTERVIEW
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