We Can Do Better!

My Response (yep, it’s long … I have a lot to say about this topic!)

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I have been a nephrology nurse for over 35 years with experience in hemodialysis, peritoneal dialysis, and kidney transplant. My husband has Polycystic Kidney Disease (PKD) and has been on hemodialysis and received 2 living kidney transplants. My daughter also has PKD with normal kidney function. I donated my kidney to a stranger on April 24, 2017, at Cleveland Clinic, Ohio through National Kidney Registry, and have a kidney voucher for my daughter. In 2018, my daughter and I co-founded the 501(c)(3) nonprofit, Kidney Donor Conversations (www.MyKDC.org) because there is not enough information and education for professionals and the public about living kidney donation, the best treatment for kidney failure. After spending my career in nephrology and caring for a family with kidney disease, I have more concerns, comments, and ideas than can be shared in this venue. 

Please consider these major issues:

1. The best treatment for kidney failure is also the least expensive and the least discussed. This makes no sense. Our taxpayer dollars should go toward getting more people a living kidney transplant. (Prevention is also extremely important, but not the focus of this request.)
2. Everyone in stage 4 chronic kidney disease receives education & resources about living kidney transplants, through primary care and nephrology providers. This means providers need education also. 
3. Dialysis units refer every patient to a transplant center for kidney transplant workup within the first 6 months. If a person is denied, there should be specific criteria for why they were denied and if any change would allow them to be re-considered (every 6 months). All dialysis unit staff receive education about living kidney donation and how to support those who are looking for a living donor by also providing education and resources to patients and families.
4. Equal funding and efforts toward educating the public about living kidney donation that there is for deceased donor registration.
5. Standardized transplant and donor criteria across the country for all transplant centers.
6. A single kidney transplant waiting list so that kidneys go to the best match, rather than 57 OPO regions, each with their own list. This would eliminate the need for multiple listing and regional variation (multiple listing gives those with money advantage and contributes to racial disparities; where you live matters regarding how long you are on the waiting list.)
7. A single living kidney donor registry that includes paired exchange, nondirected voucher options with benefits that equal or exceed National Kidney Registry so that kidneys go to the best match and donors are protected. If a transplant center does not offer a paired exchange, voucher options, or donor protections, often donors and recipients do not know these exist. Again, only the well-educated might know about other options at other centers (again, racial disparities).
8. Given that items 6 & 7 above will likely never happen, consider how you can simplify both the deceased transplant list and the living kidney registries so that the processes can be better understood, and listing on multiple registries is not necessary. And it doesn’t matter what transplant center you go to in the country – that all the information is available for you to give or get the best kidney possible, regardless of your education, race, geographical region, etc.
9. Most people believe that if they register to be a deceased organ donor, they are an organ donor. Help stop this myth. It allows people to “feel good” about donating, but they will likely never be donors. Less than 1% of those who are registered deceased donors will go on to donate. Donation depends on the health of the organs, the injury that is causing death, family consent (legally hospitals can take organs without consent, but most do not), and if the organ is actually used or discarded. Maybe more people would consider living donation if they knew the facts and low chance of deceased donation. (I advocate for registering and have been registered for over 40 years; we need all the organs, not just kidneys from deceased donors.) Presumed consent is not the answer and will not solve the organ crisis. Studies have shown that living donation goes down when presumed consent is put in place. Presumed consent does not address the reasons listed above that determine who can actually donate.
10. OPOs have been funded to focus on deceased donation and transplant. Where is the equivalent side for living donation? This always confused me as a dialysis nurse that there was no one there for living kidney donors that they could contact or get information from like there is for deceased. Create one (not 57) national landing place for anyone interested in living donation to go. See the next item for more ideas about this.
11. Create a way for interested people to provide easy initial screening and tissue sample (nasal swab?) similar to the bone marrow registry. A registry (not that we need another “registry” – maybe incorporated into a single national living kidney donor registry?) that can be accessed at community events or through an 800 phone number & website (similar to the COVID tests that are being mailed). Include basic information about living kidney donation. The current living kidney donor registry pilot through UNOS in Texas using the deceased donor registration process has many limitations. Only about half the population registers to be organ donors. We need a registry that is publicly known to everyone and anyone can easily access it. The goal is to have more people registered to donate than people on the waiting list. I realize not everyone who is registered will donate, but it’s a start in identifying people who are interested and providing them with some basic education and screening.
12. Help people understand the differences between registries for matching living donors and the “transplant waiting list” for deceased donor kidneys. This is very confusing to people and they think there is just one “list”. Plus, add in that each transplant center does its own internal living donor matching process. That would be over 100 more “lists”.
13. All transplant centers provide all the living kidney donor options and protections to donors early in the workup process regardless of whether those options are available at that specific location. And where to go if that location does not provide those options. Some donors have called this “informed consent” (but it is different than surgical consent).
14. Incentives for living kidney donors. It is expensive to donate a kidney (physically, emotionally, and financially). Again, racial disparities are an ongoing problem. At the least, donating should be cost-neutral, but please consider providing incentives. Some states are getting creative and introducing legislation. Talk to New York or Georgia. When will donors be recognized like veterans are for saving people’s lives? Let’s get standardized Kidney Donor ID Cards for discounts. Are you, the committee member, a kidney donor? If not, why not? What would motivate you to help save a life? Why should I have to donate my kidney and pay thousands of dollars also, with no tangible benefit? When I donate blood I get free water and a cookie. Sometimes a t-shirt.
15. All transplant centers provide a remote donation option. Transport the kidney, not the person donating.
16. Educate the public about being a non-directed kidney donor, since this can help the most number of people on the transplant waiting list by starting chains. And provide incentives for donating, regardless of income, race, etc.
17. National Living Donor Assistance Center – remove the income restrictions and need for recipient income. There is a silent implication that the recipient will be providing reimbursement for the donor’s expenses. But transplant centers NEVER discuss this with the donor or recipient that I know of. It wasn’t until I read the NLDAC information that I realized NLDAC assumes a financially stable recipient will provide reimbursement to donors. This is not in line with reality. Most recipients are afraid to provide money, in case it looks like they are “paying” for the organ, which is illegal. Some donors may get reimbursed, but what about non-directed donors who do not know their recipients? NLDAC has a strange assumption. NLDAC may be out of scope, but this is important for you to know as it relates to living donors and barriers.
18. Follow outcomes and kidney function of living kidney donors beyond 2 years. Donors need to be instructed on how and when to contact a transplant center long-term for any concerns. I know a donor who was going into kidney failure and never contacted their transplant center. How are long-term complications being monitored if there is no contact after 2 years? Maybe the transplant center phone number could be on their Kidney Donor ID card?
19. Transplant centers, OPOs, transplant lists, and kidney registries are all very complex and confusing (even to an educated nurse). If you are going to keep these structures/organizations as they currently exist, please help them to become more transparent in how they function and how organs are delivered to the “right” person in a timely manner. As recipients and donors go through the workup process, I know that some coordinators intentionally don’t return phone calls – as a “test” to see how motivated someone is to get or give a kidney. We, as health care professionals should be serving people, not “testing” them in this way – it is an arguably unethical and unnecessary barrier. When people don’t get the information they need, they may stop the process. Criteria and “next steps” should be straightforward and clear to anyone going through this process.

Thank you for this opportunity to provide feedback. Please let me know if I can be of any further assistance.

Glenna Frey, MSN, APRN-CNS

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Resources

https://www.regulations.gov/document/CMS-2021-0184-0001

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Would you like more information about Living Kidney Donation, email us at info@MyKDC.org

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Glenna Frey, MSN, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.