Comments

Catherine Kling | 03/17/2023

I have major concerns about the effectiveness of this system to get kidneys to those who need them under broader sharing. While a lofty goal, increased travel of kidneys has major consequences (longer CIT, more DGF, more discard, higher cost). This also looks different in different parts of the country. For Region 6 in particular, we have low population density with increased travel time to everywhere. Under the current models, our transplant rate would potentially decrease by up to 1/3, without realistically having access to more kidneys due to distance, which is unconsciousable. I would like the committee to further consider the geography, in particular population density. I think a higher emphasis on placement efficacy is warranted.

Anonymous | 03/17/2023

As a provider in Region 6, I would like to echo concerns that were mentioned during our recent UNOS Region 6 meeting. Based on preliminary projections it appears that Region 6 will be disproportionately affected by this policy change and will decrease our transplant rate in the setting of geography and dispersed population density compared to other regions. I am also very concerned about the increased organ travel time and subsequent decrease in organ survival rates for our patients. I am hoping we can come to an agreement on providing equity to all ESRD patients no matter where they live. Thank you for the opportunity to provide feedback.

Thomas Kelly | 03/16/2023

According to the research cited in favor of this change, the KIPA2022_01 Allocation Simulation Analysis Report: 4 ContinuousDistribution Policy Scenarios, any of these changes will result in an increased 1-year Graft Failure Percent. The same research also suggests that being a prior living donor may have as little as 10% weight. This is a betrayal of former living donors. Even if rescinding protections for living donors only applies to future living donors, you will discourage living kidney donation. Any legitimate kidney allocation policy will protect living donors, past and future. UNOS continues to claim this policy will be more equitable but is vague about the context. UNOS has provided no argument that this policy which is unfair to donors and will increase graft failure has any substantial benefit.

Anonymous | 03/16/2023

I support the proposal but kidney donors but should continue to receive priority should they require a transplant themselves, otherwise there will be a big disincentive for people to come forward to donate. Not only could this be counterproductive for longevity of transplants, but could also mean that those who would otherwise receive a live donor transplant, place a higher burden on deceased donor organs. The proposal must continue to recognize that it can be especially difficult for patients who are highly sensitized to receive a transplant, and their wait may span many more years than a non sensitized patient, to the extent that their age will then diminish their chances of receiving a transplant.

Cathy Perkins | 03/16/2023

In regards, especially to living donors given priority to a transplant should the need be, not kept in place is the most absurd, damaging thought I could imagine. Giving an organ. Think of that. Giving a part of your body to save someone’s life. One of the most if not the most selfless thing a human could do. I can’t imagine this happens very often but to take away that privilege would surely hurt the amount of organs donated. My donor has a child. Should that child ever need a kidney her mother has now given up the choice to save her daughter’s life should the need be. And to not be able to tell her “rest assured if YOU ever need a kidney you will go to the top of the list” She has made a decision that effects her family and life and if we won’t prioritize her is simply not acceptable.

Anonymous | 03/16/2023

I am strongly opposed to eliminating the prioritization of living donors for liver and kidney donors that has been promised to them. I endorse and echo the comments of Nancy Marlin, Jef Kinney, Team Fishguy Transplant Foundation, Jackie Hutz, Barbara Hamill, Arthur Slater, American Society of Nephrology, Emily Wise, Roberta Reed, Dian Derobertis (Herron), Elaine Perlman, Kathie Neyman, David Shabtai, David Potete, Leticia Rodriguez, Leslie Fowler-Grabowski, Micki Schneider, Armand Halte, National Kidney Registry, Living Kidney Donors Network, Janice Wirtz, Rob Lee, Susana Guarino, Terri Thede, Laurie Lee, Rhonda Hoerle,Amy Plourde, Logan Brown, Sarah Giller, Patty Graham SKM, Brian McDonald, Katharine Carney, and many more, and especially the comments of Holly Armstrong.

These commenters have articulated very eloquently the serious consequences of reneging on what was made as a solemn promise when living kidney donation was solicited.

I would like to add, that I don't consider this betrayal of a promise to be simply unethical, I think it is in many ways a kind of breach of contract, or solicitation under false pretenses. You can read today on the National Kidney Registry's website: "All living kidney donors in the United States are automatically prioritized for a deceased donor kidney transplant if they ever need a transplant, however, living donor kidney transplants have better outcomes and typically last more than twice as long a deceased donor kidney transplant."

The Registry is relying on the promises from OPTN of prioritisation of living donors. And thousands of living kidney and liver donors also have relied on that promise.

I implore you to honor your promises and not to jeopardize the public's trust in you, which is not easily re-earned. 

Wendy Doniger | 03/15/2023

As a living donor I was assured that I would be prioritized should one day I need a kidney transplant. This additional incentive was comforting to me and my family. Chances are I won’t need a transplant because the screening process was thorough however to change the guidelines now (post-donation) lacks integrity and could possibly deter future living donors to move forward with considering donation. It is a disservice to persons in need of a transplant since the number of available organs will most likely decrease in number and in turn increase fatality among those waiting for a life-saving organ transplant . Thank you.

Leslie McCloy | 03/15/2023

As a post kidney transplant coordinator, I was inspired by my recipients to donate altruistically through NKR. I hope to never need a kidney transplant for as long as I live. I did not donate because I would be guaranteed prioritization on wait list should I need a transplant in the future. However, if my gift to another person could ultimately be the reason for needing a transplant, I do feel that prioritization should be honored.

Region 6 | 03/15/2023

Members in the region offered several suggestions for the committee to consider as they continue towards Continuous Distribution. Several attendees were concerned that Region 6 will be disproportionately affected by this change and will have large decreases in transplant rate due to geography and population density.  One attendee added that using concentric circles as a distribution model disadvantages areas of the country on or near the coasts. One attendee commented that continuous distribution should prioritize increasing number of transplants and minimizing non-utilization before optimizing utility and equity. One attendee was concerned that we are moving toward continuous distribution for the sake of change and added that current modeling does not show that continuous distribution is an improvement over the current allocation system. They went on to comment that the modeling shows an increase in travel time and a decrease in organ survival rates with a small change in transplant rates. One attendee commented that normothermic perfusion and more recovery centers across the country will change organ procurement and transplant in the coming years. One attendee commented that more data is needed about how any change affects non-utilization rate for kidneys. Another attendee commented that the committee needs to consider logistics in sharing kidneys more broadly. They added that the largest concern with distance is for mid-high KDPI kidneys that can’t handle long cold ischemic times.  Since kidneys are shipped on commercial airlines, there needs to be a mechanism for placing them without adding a lot of cold time.  

Region 11 | 03/15/2023

One member commented that more modeling and data are needed to ensure it will be an improvement over the current system. Several members commented that non-utilization and logistical inefficiencies in the current system should be addressed sooner than continuous distribution is finalized and implemented.

National Kidney Foundation | 03/15/2023

See attachment.

View attachment from National Kidney Foundation

Lisa Milbrand | 03/15/2023

I am a living donor kidney recipient through a paired exchange, which has enabled 3 different people to have the benefit of better health, thanks to the incredible generosity of my sister-in-law and two other donors. I had a difficult time even asking people to consider being a living donor, and without the assurance that they would be prioritized at the top of the list if they ever needed a kidney, I would never have agreed to let my sister-in-law do this. We already have so few people who are willing and able to make this immense sacrifice, and this would likely result in even fewer people. Living donors should maintain their position at the top of the list if they ever find themselves in need.

Loren Gragert | 03/15/2023

During the AHP process, the transplant community did not receive adequate information on what is the distribution of candidates along each rating scale. Also, no information was provided on how much would prioritizing one candidate factor would decrease transplant rates for candidates with other factors. Prior living donors represent a very small fraction of candidates, so increasing their priority would virtually zero impact on time-to-transplant for other types of candidates. Likewise for extremely highly sensitized candidates (99.9+% CPRA), since their compatible donor pool is so small, such candidates are found only on a small percentage of match runs, so giving very strong priority to highly sensitized candidates should hardly have any impact on transplant rates for non-sensitized candidates or candidates with other factors. Due to these flaws in survey design, the results of the previous AHP exercise should not have much influence on development of this policy.

The results of a handful of models may not provide us enough guidance to find sets of more optimal factor weightings and allocation rules. The OASIM is an important product that came from a lot of focused effort as well as substantial public investment. SRTR should consider the benefits of making the source code available for in the transplant community to try out their own weightings and allocation rules. There is strong precedence for this, as SRTR in a 2004 publication (PMID 15717817) had the following statement "The simulations are written in Object Pascal, using Borland’s Delphi™ development environment. The resulting code is portable and openly available." This is no longer true for the current SRTR KPSAM release, but I'm hopeful for the future OASIM. This effort would make for an awesome crowdsourced data science challenge for the transplant community!

This report states that in some scenarions candidates with >80% CPRA are projected to have lower access to transplant “despite the steep CPRA rating scale used”. The steep non-linear rating scale is well designed, but has little to do with these results. The lower access to transplant is more likely caused by differences in the weighting of factors that contribute to the composite allocation score. In the current KAS250, over 80% of all possible allocation points can only come from CPRA. In the continuous distribution modeling, the max possible points in any modeled scenario that contribute to the composite allocation score has dropped to only 15%, which is a truly remarkable devaluation. Among candidate factors, I wouldn’t quite compare it to the proposed devaluation of prior living donation, but it’s close.

It is well established that there is enormous heterogeneity in transplant rates even within the current CPRA point groups (Schinstock et al. PMID 31769104, Maldonado et al. PMID 36841966 and DOI 10.21926/obm.transplant.2102143). The likelihood of getting a compatible donor offer can differ by several orders of magnitude within the CPRA point group 100. I would propose that future SRTR modeling reports on continuous distribution should include finer grained analysis of CPRA categories than categories like “80-97%” and “98-100%”.

The lack of improvement in disparity among ABO blood groups might be addressed by ABO-adjusted CPRA in tandem with removing policy restrictions for transplanting across compatible ABO blood groups (PMID 35975734). Continuous distribution is claimed to be all about removing hard boundaries, but this is a hard boundary that is planned will persist, perhaps unnecessarily.

Anonymous | 03/15/2023

Realizing that she would be at the top of the list to get a kidney should she need one was crucial to my living donor being willing to donate a kidney to me. Without that guarantee, it is highly likely that there will be a huge drop-off in people willing to donate their kidney, which would then increase the waitlist for cadaver kidneys.

Anonymous | 03/15/2023

Whilst broadly supporting a Composite Allocation Score to improve the allocation of deceased donor organs, I make my comments as a recipient of two deceased donor kidney transplants, having been diagnosed with CKD in my late 20s. I hope that the proposed system does not adversely impact the ability of highly sensitized patients to receive a first or subsequent transplant, particularly considering that sensitization does not only arise from prior transplantation but for women, also following pregnancy. My listing period of nearly 16 years, straddled the time of allocation changes made in 2014, which provided for additional points because of high sensitization, access to national donor offers and therefore a broader potential donor pool. Nonetheless, despite this I did not receive my second transplant for a further five years, when I accepted the offer of a kidney from a high risk donor. I went from being a relatively young woman raising a two year old, to an older woman, and consider that unless there is acknowledgement in the new scoring system of the torturous path that highly sensitized patients still face to receive a transplant, the access of patients such as myself to a transplant will progressively diminish the longer they wait.

Christie Thomas | 03/14/2023

I am supportive of the concept of continuous distribution for organ allocation, and I appreciate the time and effort that is being invested in developing a proposal that attempts to be equitable and efficient without substantially diminishing utility or life years gained by the recipient. Having reviewed the proposal as developed so far, and having read the anguished comments from living donors, I too am concerned about the potential loss of priority placement for living organ donors in the proposed continuous distribution model. I am opposed to the elimination of a discrete higher classification for living donors, as it is in our current system, because living donors risk losing timely access to a kidney transplant and face an increased likelihood of dying on the waitlist should they ever need one. Revoking their special place in the line for a deceased donor organ will unilaterally negate the implicit contract they had with society, and it will diminish us as a transplant community to dishonor their selfless service to our patients, to transplant centers and to society.

At the risk of restating the obvious, living donors are the finest of our citizens, who feel called to help another person, regardless of the real risk, albeit small of serious perioperative and long-term harm. In addition, some will face financial hardships and struggle with their self-care and perhaps a few will suffer a financial penalty. Our society gains tremendously from living donation since, so many more of us who receive these precious gifts are returned to health, to economic productivity and to reproductive freedom, all with greater survival than with a deceased donor kidney and at a lower economic cost. Living donation benefits transplant centers as well, as it contributes to a positive operating margin and improved transplant outcomes. Living donors uplift all of us, serving as a model of charity and altruism that elevates our humanity. We owe them a debt of gratitude and giving them deserved access to a donated kidney continues to be just and honorable. This will not meaningfully affect the access of other equally deserving people on the waitlist since the number of living donors who develop end stage kidney disease in their lifetime and are healthy enough to be accepted to the waitlist is a miniscule fraction (~ 0.2%) of the 150,000 plus living donors that have graced us.

As a transplant nephrologist I have had the privilege of meeting scores of prospective living donor candidates over a 30-year career. More than a mere messenger, I have acted as an agent, handing them a promissory note of the Societal commitment that their transplant needs will be met if they were ever needed an organ they gave selflessly at a time when someone else had a need. I, along with hundreds of transplant professionals who have interacted with living donors as they entered the donation process, will feel that we have failed them in their hour of need.

I hope and trust that UNOS/OPTN will create a pathway for living donors that is not constrained by the continuous model of organ distribution, where they are just another attribute in a composite allocation score. Let us not now renege on our compact with the best of the best.

Christie P Thomas MD

Medical Director, Kidney Transplant Program, University of Iowa Former chair, UNOS Living Donor Committee

Former chair, AST Living Donor Community of Practice

John Ellis | 03/14/2023

As a living donor I want to say that knowing if for one reason or another if I needed a kidney, I would go to the top of the list weighed heavily in my decision to proceed with donating. I think taking this away will result in a decrease of donated organs.

Association of Organ Procurement Organizations | 03/14/2023

Thank you for the opportunity to submit comments on the Organ Procurement and Transportation Network’s (OPTN’s) policy development process on behalf of the Association of Organ Procurement Organizations (AOPO). AOPO collectively represents 48 federally designated, non-profit Organ Procurement Organizations (OPOs) in the United States, which together serve millions of Americans. As an organization, AOPO is dedicated to providing education, information sharing, research, technical assistance, and collaboration with OPOs, other stakeholders, and federal agencies to continue this nation’s world-leading transplantation rates while consistently improving towards the singular goal of saving as many lives as possible. We offer the following comments for your consideration:

As stated in our previous comment on this proposed policy, AOPO supports the ongoing efforts of the OPTN to implement the continuous distribution of kidneys and pancreata.

In general, AOPO believes using this continuous distribution methodology for kidneys moving forward should help reduce the unacceptably high number of kidneys being recovered and not transplanted, as well as increasing the utilization of kidneys from medically complex donors.

AOPO agrees with the need to model any HLA matching prioritization for unintended disparities, especially for minority populations. We believe more robust data is needed to consider HLA matching for pancreata. AOPO supports prioritizing highly sensitized candidates, prior living donors, and pediatric candidates in the continuous distribution model. AOPO supports a linear approach to implementing continuous distribution for kidney and pancreata and emphasizes the importance of assigning more points to attributes that will drive efficiency of allocation based on organ quality and donor type (DCD). Organs from medically complex donors represent a significant opportunity to increase organs transplanted and these organs are more likely to be transplanted with less ischemic time. Development and implementation of organ acceptance filters and predictive analytics will facilitate efficient allocation of organs to transplant centers likely to accept them, reducing ischemic time, and discard rates. AOPO strongly recommends the OPTN implement these tools simultaneously with continuous distribution.

A points-based framework should consider the virtual crossmatching of recipients in addition to proximity and transportation to drive efficiency and minimize placement time. Additionally, a continuous distribution framework should allow OPOs the freedom to use dual allocation of marginal quality kidneys to increase utilization and decrease discards.

Mary Anne Razim-FitzSimons | 03/14/2023

I am the mother of a transplant recipient, the wife of a man who was the living donor for our daughter, and I myself will begin the evaluation process to become a nondirected living donor next year. When my husband donated his kidney to our daughter the assurance that her father would receive priority if he needed a kidney in the future was very much on our daughter’s mind when she agreed to accept a kidney from him. And, quite frankly, one big reason I am willing to give a kidney as a nondirected donor is that I’ve been assured that I will have a high priority should I later need a kidney myself. The years-long waitlist for transplantable kidneys underscores the desperate need we have for people willing to become living donors. Cadaver kidneys simply don’t fill the need for transplantable organs, and we are still years away from having an implantable bioartificial kidney as an alternative to an actual organ. Dialysis is a poor substitute for a kidney, and if we reduce incentives for people to become living donors then we will be sentencing many more end-stage kidney patients to the extreme limitations that come with life on dialysis. Quite simply, we need living donors, and we cannot in good conscience ask people to become living donors if we are not also prepared to prioritize them for kidneys should their remaining kidney subsequently fail. This proposal, as it stands, will discourage potential living donors, increase the wait time for kidneys all around, and leave more people tied to dialysis machines, dying unnecessarily due to an ill-conceived policy change. Please don’t do that to the people who choose to donate and to the people who would receive those living donor kidneys. Thank you.

John FitzSimons | 03/14/2023

Hello. My name is John FitzSimons, and I was the living donor for my daughter's kidney transplant. When I, together with my family, made the choice to become my daughter's donor, my wife, daughter, and son were all concerned about what would happen if my remaining kidney became compromised later on. The assurance that as a living donor I would be prioritized on the transplant list was persuasive to my wife and children. It allowed my daughter to receive a kidney from me without worrying that my donation would harm me. The policy of prioritizing living donors for later transplantation, if it becomes necessary, is important for assuring not only the donors but their families that they will not be consigned to long waits and dialysis should their remaining kidney fail down the road. This reassuring policy encourages people to donate and their families to support donation, and should remain in place.

Kidneys For Communities | 03/14/2023

See attachment.

View attachment from Kidneys For Communities

Donor Network of Arizona | 03/14/2023

Donor Network of Arizona is pleased to see the progress that continues to be made with continuous distribution. Any allocation system must balance patient needs with system efficiency, and DNA encourages the committee to continue exploring how best to balance the stated goal of getting organs to the sickest patients quickly without making the system inefficient by requiring multiple offers be made before a recipient is found. We note that the recent implementation of continuous distribution for lungs has resulted in east coast center candidates at the top of west coast lung matches, even though the east coast centers in question have no intention of traveling that far for those organs. The new policy should require that centers use appropriate filters (size, distance, etc.) to reduce the number of unacceptable offers transmitted

Anonymous | 03/14/2023

As an altruistic Kidney Donor, I would like to make it clear that the fact that live kidney donors get priority weighed heavily into my decision to donate as it provided a safety cushion and helped ease a lot of concerns.

I think it would be a disservice to those that are in need of a kidney transplant to remove that incentive for live kidney donors to donate. It would likely result in less donation of live-kidneys.

I also think it would be unfair to those that already donated if their priority status were retroactively altered as a result of this new policy.

Furthermore, it would call in to question all of the other information that we were told when we considered going through with the donation. It would be a disservice to those in need of a kidney if the information that is being shared with potential donors could not be relied on.

I hope you consider these points as you move forward with this process.

Kidney Transplant Collaborative | 03/14/2023

See attached comment letter

View attachment from Kidney Transplant Collaborative

Region 7 | 03/14/2023

A member commented that they appreciate the consideration for modeling complex situations and considering special exception requests.

Region 1 | 03/14/2023

During the discussion, an attendee shared concerns about unintended consequences and that sometimes kidney-pancreas are used to draw organs, but sometimes the pancreas ends up not being used, and the committees should consider what happens to the kidney in these situations. A member remarked that they would like the committees to consider consequences for late turndowns and to think through provisional yes and have it carry more weight. An attendee commented that setting the parameters to mimic current system makes sense. An attendees suggested emphasizing factors such as decreasing distance to the transplant center to minimize cold ischemic time to help expedite placement of hard to place kidneys. A member commented that the work of the committees is going well and in the right direction. Another member favored no policy changes until after the transition into continuous distribution.  

Gift of Life Michigan | 03/14/2023

Using continuous distribution methodology for kidneys moving forward should help eliminate current inequities in organ acceptance rates created by using the Kidney Donor Profile Index (KDPI) calculation, thereby reducing kidney non-utilization and increasing transplant of kidneys from medically complex donors.

We support prioritizing highly sensitized candidates, prior living donors, and pediatric candidates in the new system. We support a piece-wise linear approach and emphasizes the importance of assigning more points to attributes that will drive efficiency of allocation depending on organ quality and donor type (DCD). It is imperative the OPTN develop and implement the use of filters and predictive analytics to match more organs with the transplant centers which will accept them and reduce current discard rates. We implore you to implement the usage of these tools before the implementation of this policy.

In addition to proximity and transportation, a points-based framework should consider the virtual crossmatching of recipients to drive efficiency and minimize placement time. Additionally, a continuous distribution framework should allow OPOs the freedom to use dual allocation of kidneys from medically complex donors to increase utilization and decrease discards.

Transplant Families | 03/14/2023

Transplant Families supports the comments of the OPTN Pediatric Transplantation Committee. We would also like to add that we see the other comments from living donors and commend them for speaking up. As many in our population as caregivers are also in this group we want to elevate that voice for priority in listing.

Anonymous | 03/14/2023

I am currently toward the end of the process of being evaluated to give as a non-directed kidney donor. I began the process late last year after having many discussions with my husband about the risks associated with donation. One of the factors that weighed heavily in his being comfortable with me proceeding (I am a stay-at-home mom to two young children, one of whom has special needs) was that if something were to ever happen to my remaining kidney, I'd be prioritized on the waiting list. I've watched the videos about the new proposed system, and I'm not convinced that the "prior organ donor" points will weigh heavily enough in the new system. Without more clarity around the subject, and if the prior donation wouldn't weigh heavily enough, I am afraid we will have to reconsider my donating at this time. And, to be quite frank, the idea that something promised can be changed at any time makes me hesitant to agree to donating at all. Please don't walk back on what's been promised to so many prior donors. And please make sure that living donors are encouraged to give by being heavily prioritized.

American Society of Transplant Surgeons | 03/14/2023

The ASTS is in support of the concepts behind the Continuous Distribution of Kidneys and Pancreata being undertaken by the OPTN committees. This is not truly a proposal nor are there final details being submitted for comment, so we cannot agree or disagree with this Committee Update as a whole. We will comment on particulars within your latest document for this Public Comment Period ending March 15, 2023.

We agree with the concept discussed that kidney allocation needs to weigh the longevity of deceased donor grafts more heavily in the allocation system design. We agree with having better correlation with the KPDI and EPTS as per the prior LYFT proposal during KAS development. The system must change the major advantage the high CPRA candidates (CPRA 99.51 to 99.98) have in receiving organ offers, especially when this is in opposition to longevity considerations and also to fairness considerations as most of these high CPRA candidates are receiving their subsequent transplant, not their first transplant, and with much shorter waiting time than the average recipient.

We agree with the following three concepts:

Increased Longevity: “This scenario increased the weight/importance of transplant outcomes from 10 percent to 40 percent divided between human leukocyte antigen DR (HLA-DR) and longevity matching. The weights for all other attributes were decreased proportionally.”

The details of how longevity is estimated are very important. In the original LYFT simulations, longevity of patient survival was based on the actual kidney being offered with candidate, donor and interactive variables for each offer. This considers HLA matching, potential function of organ (KDPI and other interactions), and potential survival of recipient (EPTS with interactive terms) for each organ offer. This also needs to appropriately measure the decreased expectations for subsequent transplants compared to first transplant recipients.

Increased Placement Efficiency/All Donor Efficiency: “This scenario increased the weight/importance of proximity efficiency from 10 percent to 30 percent. The weights for all other attributes were decreased proportionally.”

ASTS feels the distance should involve population densities so organs may need to travel less far in highly dense areas, but further in lower population density areas of our country to allow for relatively equal access.

Harder to Place Kidneys/High KDPI Efficiency: “This scenario increased placement efficiency for harder to place kidneys (high KDPI) with an increased donor weight modifier for KDPI 86-100 percent.”

ASTS believes the placement of these hard to place organs is complex and must involve the groups who actually offer the organs and accept the organs in most programs since they alone understand the challenges of transplanting these organs at all hours of the day. Centers need better organ filters so they can more granularly list patients for various types of hard to place organs. In turn, centers need to be accountable for listing their patients appropriately. These organs also need oversight forgiveness in addition to the standard “risk adjustment” which is not felt by most centers to truly estimate risk, especially if we want centers to transplant more of these kidneys which likely were not truly in the set of organs developing the prior risk adjustment variables.

The ASTS is very concerned that once this concept of Continuous Allocation for Kidney and Pancreas becomes policy, the point assignments and other adjustments to the allocation factors could be done by a small group of individuals under operational rules falling outside the policy development cycle with public input. We would strongly suggest a provision to all the Continuous Allocation distribution organ proposals that mandates that any change in point assignment or other calculation that results in a change in simulated allocation to more than 5% of recipients be put forth for formal Public Comment. This would alleviate concerns that a small group could have unfair influence on national organ allocation/distribution.

Summary of ASTS Suggestions for Kidney and Pancreas Committee Consideration: Distribution consideration based not only on distance, but population density and distance to help increase the proximity efficiency attribute weight and not disadvantage rural candidates where longer distances are required for fair access.

Pediatric candidates: Require each transplant program to adjust distance acceptable to their program. Review this annually and consider adjusting allowance of distance acceptable to program.

We agree with adjusting the CPRA priority. CPRA points should allow for equal access, not increased access as has been the case in the current KAS. We also agree that high CPRA should have a negative value in longevity considerations.

Dual Kidney:

Considerations for improved utilization:

Allow centers to only list a small percentage of their candidate wait list as accepting Dual Kidneys so real thought is put into this decision and the best candidates are chosen and ready to be transplanted.

Initial allocation of dual kidneys based more stringently on objective criteria such as eGFR and/or donor age or size of donor/kidneys. OPOs are not offering many kidneys out as dual kidneys until after they have many declines for single kidney alone offers. Dual kidney offers should be the primary offer for some donors.

En Bloc Kidneys:

Allocation of en bloc kidneys based more stringently on size and/or age of donor.

Allow centers to list a small percentage of their WL for these organs

Pancreas allocation: Agree that for facilitated pancreas offers, some number of offers to standard programs on the WL should be done. This could be as short as two different programs refusing the offer for the top candidates on the standard WL, but it should encompass some standard offer attempt.

KP offers: KP candidates could be given a large number of points for CAS and limited by distance to mimic the current circles since this has been working per the report. For example, give all the KP candidates an additional 20 points within 250 NM and they would appear above all but the most highly sensitized kidney alone candidates within that area.

Kidney Minimum Acceptance Criteria (MAC) should be updated to allow for more granular choices by the transplant programs for their patients.

‘Offer Filters’ should allow transplant programs to set several different filters for various groups of patients so they can set filters based on what the programs consider acceptable offers for those different groups of candidates. For example, a center can create five different groups within their waiting list and assign each patient within one of those groups to the appropriate Offer Filter. This should help efficiency of allocation and help programs remain within the expected organ Acceptance Rate metric while still entertaining more difficult to place organs for some of the candidates on their list.

Released Organs: We agree with the discussion as written.

Kidney and Pancreas Review Boards Workgroup: We agree with the discussion as written.

View attachment from American Society of Transplant Surgeons

OPTN Histocompatibility Committee | 03/14/2023

The Committee supports the work that is being done for this proposal.

American Society of Transplantation | 03/14/2023

The American Society of Transplantation (AST) offers the following comments for consideration in response to the committee update, “Continuous Distribution of Kidneys and Pancreata:”

• The AST fully supports the efforts towards a continuous distribution allocation system.
• There are concerns that these efforts are not appropriately considering pediatric candidates. Increasing availability to more kidney-pancreas recipients risk causing further inequity to pediatric patients.
• As the longevity attribute is associated with age and racial disparities in distribution, the AST encourages avoiding scenarios such as "all donor efficiency” and “increased longevity" that exacerbate socioeconomic disparities.
• The “increased placement efficiency” scenario should also be de-prioritized, as it can contribute to increased geographic disparities.
• With this and the other proposals for continuous distribution, it would be important and beneficial to conceptualize evaluation criteria (i.e., objective and measurable criteria by which we can determine the implementation of these new protocols are successful) ahead of their implementation.

American Society for Histocompatibility and Immunogenetics (ASHI) | 03/14/2023

This proposal is not pertinent to ASHI or its members.

Megan Fairbank | 03/14/2023

The proposal for continuous distribution allocation changes significantly impact the efficiency and access to transplantation in regions with large geographic regions, such as Region 6. As we have seen with recent allocation changes, discard rates may continue to increase due to the reduced efficiency in the system with this proposal. Flights are more difficult to coordinate over the past several years, offers are making it to transplant centers later, costs are sky-rocketing. These problems will only be exacerbated by continuous distribution. The system should focus on decreasing discard rates and improving OPO efficiency, and as a result improve the number of organs transplanted and lives saved, which is our ultimate goal in the transplant community. Additionally, I am concerned this proposal may further disparage the recipients living in rural areas, that already have poor access to healthcare they need. As a system, we should be trying to minimize the impact that social determinants of health have on access to healthcare and this unfortunately may only further emphasize the disparity patients in rural areas face.

OPTN Transplant Administrators Committee | 03/14/2023

The Transplant Administrators Committee thanks the Kidney and Pancreas Committees for their continued efforts to develop a continuous distribution framework for kidney and pancreas allocation.

TAC members offered the following:

Comment about whether the OPTN reviews how often a transplant center accepts a kidney-pancreas offer then states the pancreas is not transplantable and keeps the kidney. 

Comment about transplant centers and OPOs sharing the cost or granting waivers for pancreata from DCD donors. 

Region 8 | 03/14/2023

Region 8 appreciates the update and supports how this project is developing. An attendee said that she supports reviewing the various models available. Another attendee commented that this is very meaningful work but the committee needs to keep in mind that continuous distribution is rationing an already limited resource. A member requested an exercise that determines which of the factors are weighted by most of the community, both by the allocation exercises in OASIM and also explicit (competing risk) surveys. An attendee pointed out that some aspects of the model impact candidates >98%; these candidates should be at the top of the list. An attendee inquired whether urgency is going to be a static assignment for every candidate, or if urgency is going to be variable, and whether a candidate can be more urgent

NATCO | 03/14/2023

NATCO supports the goal of a more equitable approach to matching kidney and pancreas candidates to donors, and appreciates the continued research of this proposal. However, there is concern that greater distances for sharing would lead to increased difficulty with placement of organs, leading to more, not less, discards. In addition, when accepted, there could be an increase in travel distance, leading to more cold ischemia time and delayed graft function. NATCO supports continued modeling to determine the best attributes and weighting for an overall equitable score.

Team Fishguy Transplant Foundation | 03/14/2023

Living Donors should be assured that if the need arises for a transplant, they will be placed at the top of the list. Finding a Living Donor is not easy. It is important to give a potential donor facts and not wishes. Please be very clear for all past and future donors that their need will be given top priority. They cannot be placed in the 3-5-7 year wait list. Super Heroes deserve better. Team Fishguy Transplant Foundation requests clear language for this update.

Jackie Hutz | 03/14/2023

When someone chooses to be a living donor, they must always be at the top of the line if something happens to their remaining kidney. No one will choose to donate if they are given the 5-7 year wait for an organ. Do not make it more difficult to find living donors.

OPTN Transplant Coordinators Committee | 03/14/2023

The Transplant Coordinators Committee thanks the Kidney and Pancreas Committee for their efforts in developing this white paper. 

A member asked about the modeling results that show the median distance increase for pediatrics. She commented that her program’s practices will not change because they don’t accept kidneys from far way unless it is for a difficult to match candidate. 

A member commented about trying to balance risk of mortality on the wait list versus long term outcomes. For example, black candidates on the waitlist are often referred late and having a higher risk of death on the waitlist. Additionally, when you consider other comorbidities, they have less likelihood of long-term survival which makes it challenging to balance mortality and outcomes. 

Barbara Hamill | 03/14/2023

I donated a kidney through the matched pair program on behalf of my sister-in-law in 2019. Of course there was no question that I wanted to be tested for comparability and would donate to help save her life. My kids in particular felt relief and much comfort in knowing that should I need a kidney down the road, I would be out at the top of the recipient list due to my previous donation. I feel this possible change to the UNOS’s policy of not giving priority to living donors will greatly impact the number of living donors willing to donate. There is a huge shortage of donors, so why make this supply decrease even more?

Anonymous | 03/14/2023

Please do not make a change to living donor prioritization if they need a transplant in the future. This benefit was a major deciding factor in my donation decision.

Gift of Life Donor Program | 03/14/2023

Gift of Life Donor Program (PADV) thanks the OPTN Kidney and Pancreas Transplant Committees Committee for their important work and the opportunity to provide comment on this policy proposal. Gift of Life remains supportive of the continuous distribution framework, however, are concerned about the limited weight given to placement efficiency, particularly when its only variable is the distance between donor hospital and transplant center. It remains unclear what the impact of this policy will have on: OPO allocation activities, kidney discard rates, cold ischemic time and costs increases related to kidney shipping. Without modeling and the ability to run test matches, OPOs and transplant centers cannot understand or planned for the impact this model will have on donation, allocation functions, organ offers and transplants. While we appreciate the increase in weight of placement efficiency from 10 to 30%, distance alone is not enough to determine how efficiently an OPO can place a kidney with a patient. Placement efficiency must be dynamic enough to consider the number of candidates and transplant centers OPOs interact with to achieve kidney acceptance. The number of transplant centers and waiting candidates is the largest variable in how efficiently a kidney can be allocated in sequence to a candidate. These variables do not impact all parts of the country equally and puts OPOs at a disadvantage when allocating kidneys in a densely populated part of the country such as the Northeast, where currently, a kidney match run may include close to 6,000 candidates across nearly 70 centers and overlapping up to 13 unique DSAs. Based on the recently made available test match run the for the continuous distribution of lungs, it is evident that OPOs will be using a true national allocation list. For example, a lung list generated for an OPO on the east coast contained several lung patients from the West coast within the top 10 candidates. We do not believe that there is an adequate infrastructure in place to support kidney allocation in a continuous distribution model. The full effect of the kidney allocation policy updated in March of 2021 that created 250 nautical mile circles around the donor’s hospital has not yet been fully realized or studied, however some data shows that since implementation, there has been an increase in discards across all types of deceased donor kidneys, increased cold ischemic time and increased distance in kidney shipping. The current network of couriers, commercial airlines and open cargo hours at airport is inadequate to support a continuous distribution model for kidneys and would likely lead to an even bigger increase in kidney discards, cold ischemic time and logistical issues. Furthermore, the proposal update does not include any transplant center requirements to fully evaluate primary and backup kidney offers pre-recovery, determine recipient appropriateness, complete a final cross match, ensure patient readiness & availability, and commit to accepting a kidney with acceptable intraoperative findings. Every kidney donor should have at least 5 potential candidates identified prior to organ recovery. When centers refuse to consider an offer until all intraoperative information is available, and their candidate is primary, cold time increases and OPOs have trouble completing sequential allocation. The proposed kidney and pancreas review workgroups should be responsible for oversight and investigation into late kidney turndowns by programs after acceptance, shipping, and delivery. Since implementation of the new kidney policy in March of 2021, there have been several instances of transplant centers rejecting kidneys upwards of 16 hours after delivery due to recipient issues and/or review of donor information that was not fully evaluated at time of acceptance. This behavior adds cold time to kidneys, makes reallocation efforts challenging and increases kidney discards. Since implementation of the 250 nautical mile policy, expedited or out of sequence allocation has increased at most OPOs. No data has been shared that shows how continuous distribution will increase kidney utilization and/or sequential allocation. In fact, by adding more transplant centers, and candidates at greater distances we expect this negative trend will continue and does not serve the purpose of increasing equity in a manner that doesn’t jeopardize the utilization of deceased donor kidneys.

Kidneys for Communities | 03/13/2023

From: Atul Agnihotri, Chairman, and Executive Director, Kidneys for Communities Ira Brody, Co-Founder, Kidneys for Communities Debbie Shearer, Altruistic kidney donor, Board Member, Kidneys for Communities

Subject: New UNOS continuous distribution model for kidney and pancreas allocation

We understand that UNOS is changing how it prioritizes and allocates kidneys and pancreas from deceased donors. The new system, called continuous distribution, will use points to rank candidates based on multiple factors such as medical urgency, expected post-transplant survival, the distance between donor and recipient, and blood type compatibility to increase equity in “deceased donor” transplant access for candidates nationwide. Living kidney donors who need a transplant will still get priority points, but we have received inquiries from past and potential donors who are concerned that they may not be ranked as high based solely on their living kidney donor status, as they were under the previous system. This is because some of the factors that affect their ranking may change under continuous distribution, such as distance or blood type compatibility. If UNOS focuses narrowly only on optimizing outcomes from the “deceased donor” organ allocation, then it can end up neglecting the broader impact of “living kidney donation”. Living kidney donors have given a third of all transplants in the last 20 years. Their transplants last longer and have better outcomes than those from deceased donors. Therefore, they would have 50% to 75% of the impact of all deceased donor kidneys transplanted in the past 20 years. We are Kidneys for Communities, the first platform for community-directed donation in the U.S. We are increasing the number of living kidney donations within communities. We have extensive experience in working with living kidney donors and we know their fears and risks as they take personal risk to save another’s life. They often ask: “what if I or my family need a kidney later?”. The promise of living and deceased donor kidney prioritization is often the assurance that turns the potential donor into a living kidney donor. Without this priority and assurance, they may be discouraged from donating. In being singularly focused about outcomes from the deceased donor transplant, we are afraid that UNOS can hurt the living kidney donation, in the U.S. Moreover, our experience over the years and the evidence show that living kidney donors have a very low risk of developing ESRD and needing a kidney transplant themselves. A study of over 124,000 living kidney donors who donated between 1994 and 2016 found that only 218 of them developed ESRD. Therefore, giving priority to living kidney donors would not significantly affect any other recipient group. We urge UNOS to uphold the highest priority access to a deceased donor kidney to living kidney donors, as they warrant this recognition and protection for their generous act.

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Richelle Slater | 03/13/2023

Come on! Best decision I have ever made was donating a kidney! Removing the higher priority on the Kidney Transplant list will discourage living donations. Living kidney donations are life savers.

OPTN Membership & Professional Standards Committee | 03/13/2023

The Membership and Professional Standards Committee (MPSC) thanks the Kidney and Pancreas Transplantation Committees for the opportunity to review and comment on the Continuous Distribution of Kidneys and Pancreata Committee Update.

The MPSC discussed the importance of the placement efficiency attribute and suggested additional consideration be given to population density and programs who are located in the corners of the country since much of the nautical mile circles for those programs land in areas outside of the U.S. The MPSC advocated for a more equitable and uniform allocation system that would be applied to all members and supported the use of mathematical optimizations to evaluate the best proposed policy option.

The MPSC shared their concerns for inefficiencies in the system regarding travel and the impact of time of day, but acknowledged these are system issues and may be out of scope for the first iteration of the Continuous Distribution of Kidneys and Pancreata. The MPSC also stressed the importance of considering the rise in allocations out of sequence and expedited placement practices by organ procurement organizations (OPOs) when developing this continuous distribution framework. The MPSC concluded that identifying specific criteria for kidneys that would benefit expedited placement and a specific expedited allocation algorithm for OPOs to follow would be of tremendous benefit to the community to have a uniform practice pattern.

Arthur Slater | 03/13/2023

I am a transplant recipient receiving a kidney from my wife six years ago. As I understand the proposed changes to transplant priority, a prior living donor in need of a new kidney would be evaluated amongst the general pool of other prioritized recipients. Whereas today I believe she would be considered almost “first in line.” I must stress the necessity to maintain the highest priority for living donors should they require a transplant following donation for three reasons: First, if my wife were ever to require a replacement kidney, it seems unfair to “move the goalposts” on her when she graciously donated a kidney assuming that she would have near-highest priority should she need an organ transplant herself. Second, being at the “top of the transplant list” brought past donors comfort. It is a major selling point for closing the deal for living donors. It is a powerful statement to say "you go to the top of the list." Not being able to make this statement has a high probability of reducing the number of people who would ever consider living donation. Third, a problem already exists for those requiring a transplant having the courage to seek living donation. Needy recipients would feel even less comfortable asking a friend or loved one to make the commitment of a living organ donation. Concern that their doner would be assigned a low priority in the organ transplant pool were they to develop a need for a transplant themselves would discourage ever seeking a donor. It would become “too much to ask.” I’m not sure I could have put my wife through that process not knowing what would happen should she require a kidney. You must be careful not to eliminate the fearful donor and caring recipient all in one fell swoop. I see it as a mandatory requirement to adequately elevate past organ doners to near the top of any transplant priority list or it is “Bye-Bye” to living donations – The most effective tool against acute organ failure we have.

James Wynn | 03/13/2023

I applaud the Committee's efforts as it continues to develop a continuous distribution allocation model, and I appreciate its soliciting public and professional feedback on the relative weights of the various proposed components. I encourage the Committee to critically evaluate whether geographic proximity between transplant center and donor hospital should receive ANY weight within a distance that readily allows automotive courier transportation of the organ (the current 250NM distance reasonably distinguishes those kidneys that can be easily transported by automobile from those needing commercial air transport, in my opinion) When organs are transported by road, there is not any substantial logistical benefit to allocation to patients at a closer center. This has become even more true as organ recovery is performed more frequently at organ recovery centers, thereby disrupting whatever geographic relationship existed been the donor hospital and the centers within the 250NM radius. Furthermore, awarding 'match distance points' inappropriately benefits persons listed at centers in large metropolitan areas with many donors near the center, and disadvantages those listed at more rural centers with fewer donors close by. Awarding additional allocation priority equivalent to up to two years of dialysis exposure cannot be justified by a near-trivial logistical benefit.

Anonymous | 03/13/2023

If your new kidney ranking system was in place when my wife completed a non-directed kidney donation last December, I would have STRONGLY resisted her donation. An altruistic, voluntary doner that needs a kidney should be moved to the top of the list and not put back in the pile. Implementing this policy will essentially stop all non-directed donations in my opinion.

American Society of Nephrology | 03/13/2023

Dear Dr. McCauley, Dr. Pavlakis, and Dr. Forbes: On behalf of the more than 37,000,000 Americans living with kidney diseases and the 21,000 nephrologists, scientists, and other kidney health care professionals who comprise the American Society of Nephrology (ASN), thank you for the opportunity to respond to provide comment regarding the Organ Procurement and Transplantation Network (OPTN) Kidney and Pancreas Committee Update: Continuous Distribution of Kidneys and Pancreata. Maximizing patients’ access to kidney transplant—and ensuring that access is equitably available to all patients—is of utmost priority for ASN. The society stands ready to work with OPTN, and the OPTN Kidney and Pancreas Committees, to achieve this goal. The OPTN Kidney and Pancreas Committees have put several years of work into envisioning a future system of continuous distribution, and as the update makes clear, more years of work remain before this vision will be finalized and implemented. ASN’s comments at this time focus on how living donors will be prioritized in the future system of continuous distribution of organs for transplantation. It would appear, based on Figure 3 “Example of a Composite Allocation Score Match Run (Proposed),” that living donors would be substantially de-prioritized if this new system is implemented. This possibility is deeply troubling. Thousands of living donors nationwide made the decision to provide a kidney to a person in need under the auspices of a commitment that should they ever need a kidney, they would be prioritized above virtually all others. As depicted in Figure 3, however, it appears OPTN may intend to renege on that commitment: the prior living donor is last among all candidates. The credit allotted to the living donor for having previously donated a kidney appears to be approximately just 10 points—fewer points than allocated to other depicted patients for expected post-transplant survival, medical urgency, and pediatric age group. Decisions regarding which patients to prioritize in an allocation system are not easy. However, it is vital that prior commitments to living donors be honored in any new allocation system. It would be a massive violation of trust to living donors to alter the prioritization they were promised and would almost certainly be a substantial deterrent to anyone considering living donation today and in the future. Kidneys from a living donor tend to confer the best outcomes for recipients and can uniquely help address the gap between wait-listed patients and kidneys from deceased donors. Policies should be designed to support and care for individuals who are interested in donating: Figure 3 indicates OPTN policy may be moving in the opposite direction. Living donors deserve more support than the current system provides for them, not less. ASN urges OPTN and the OPTN Kidney and Pancreas Committees to clarify how OPTN envisions prioritizing living donors immediately. ASN implores OPTN to continue to honor commitments to ensure rapid access to a kidney to prior living kidney donors and extend that commitment to future living kidney donors, should the donors ever need a kidney transplant themselves. Please contact ASN Strategic Policy Advisor Rachel Meyer at rmeyer@asn-online.org with any questions or to discuss this letter in more detail. Sincerely, Michelle A. Josephson, MD, FASN President

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susana guarino | 03/13/2023

Thanks to my sister and nephew who were my live kidney donors I'm alive today. There is no way to express my gratitude for what they have done for me. I can't imagine how tough the decision to be a live donor must be, but i know what a recipient feels. There are many mixed emotions in accepting this astronomical gift and not a minute goes by that I'm not thankful and grateful. It was difficult gift to accept because I felt and still feel a lot of guilt of what i was putting my donors, family and friends through. One of my main concerns was and will always be my donors health. I was relieved to find out that if they ever needed an organ they would be put at the top of the list and this is one of the reasons for me accepting the gift. I understand that changes need to happen in distributions of organs but live organ donors from past, present and future must be put at the top of list. This is non negotiable and i believe the most ethical thing to do. I hope that this promise that was said to my donors and I is kept. Thank You

Emily Wise | 03/13/2023

I am a living kidney donor and kidney donor mentor with the National Kidney Donation Organization (NKDO). I donated my kidney at 24 years old, and when asked the question, “what if you ever need a kidney someday?” I was proud to state that I would have prioritization should that ever happen. With the new proposed model, future living donors may not be able to day the same. I also wouldn’t feel right talking to potential donors knowing they wouldn’t have the same priority I was promised. This new proposal will certainly turn future donors away from donating and therefore mean more recipients left looking for a donor. Please reconsider this proposed model to include what is best for living donors.

Roberta Reed | 03/13/2023

I believe organ donors should retain priority on the kidney transplant waitlist should they experience a kidney issue with the remaining kidney they have. You see, my son received a kidney from a living donor enabling him to get off dialysis and move on with his life. At the time of the transplant he was just 24 years old and his donor was 57 years old. One can never repay a person for saving a life by giving part of their body to another. I feel the very least we can do is offer this selfless individual priority on the waitlist should he ever need to get a kidney.

Dian Derobertis (Herron) | 03/13/2023

I donated a kidney to my sister in 2018. Of course there was no question that I wanted tk be tested for comparability and would donate to help save her life. I felt much comfort in knowing that should I need a kidney down the road, I would be out at the top of the recipient list due to my previous donation. I feel this possible change to the UNOS’s policy of not giving priority to living donors will greatly impact the number of living donors willing to donate. There is a huge shortage of donors, so why make this supply decrease even more?

Anonymous | 03/13/2023

The current models are not much different from what we already have. There are models where transplant numbers for minority groups decreases which is completely unacceptable and cold-ischemia time increases because distance increases which may have unintended consequences such at organ turn down and non-transplantable organs.

American Society of Pediatric Nephrology | 03/13/2023

The American Society of Pediatric Nephrology (ASPN) appreciates the opportunity to submit comments to the Organ Procurement & Transplantation Network (OPTN) on the Continuous Distribution of Kidneys and Pancreata Committee Update.

ASPN agrees with the high prioritization of pediatric candidates within the continuous distribution framework and recommends that pediatric priority be a top consideration throughout the process. We are deeply concerned about the increased travel distance seen in three of the modeled scenarios. This increased travel distance could lead to decreased graft survival for pediatric candidates by increasing cold ischemia time and delayed graft function. The high pediatric priority will likely to lead to increased offers for pediatric candidates, but it is not clear from the modeling that the majority of these offers will be acceptable for transplantation. We also are concerned about the modeling results that demonstrate reduced transplant rates for highly sensitized and racial minority candidates. In addition, we recommend a framework where pediatric recipients are prioritized for pediatric donor kidneys, regardless of donor KDPI.

Children are recognized as a vulnerable population with special needs by societies around the globe, something that was acknowledged by the United Nations Declaration of the Rights of the Child in 1959. Chronic kidney disease in children, especially during times of dependence on dialysis, leads to abnormal nutrition, metabolic acidosis, anemia, bone disease, poor muscle strength, altered growth hormone-insulin-like growth factor-binding protein axis, impaired cognition and loss of time at school, which disrupts the complex process of growth and development. Compared with dialysis, a successful kidney transplant in childhood leads to better growth, development, academic achievement, and quality of life for patients and families.

Since the 1990s, the OPTN and UNOS have recognized the special needs of children for transplantation by giving priority for kidney transplant allocation to children less than 18 years old. Initially, children were given extra allocation points (four points for those under 11 years old and three points for the 11-17 years old. In 1998, children were mandated to move to a higher level of allocation priority based on if their wait list time exceeded a predefined acceptable time frame: 6 months for 0-5 years, 12 months for 6-10 years and 18 months for 11-17 years.

The Children’s Health act, passed by Congress in 2000, mandated more recognition of children’s special needs for transplantation. This law amended the National Organ Transplant Act of 1984 specifically “to recognize the differences in health and in organ transplantation issues between children and adults throughout the system and adopt criteria, policies and procedures that address the unique health care needs of children”. In response to this directive, the OPTN/UNOS continued to modify allocation policy over time by giving children better access to high-quality donors through Share 35 in 2005 and further increasing waitlist priority for children in new kidney allocations systems adopted in 2014 and 2021.

Elaine Perlman | 03/13/2023

When I decided to donate my kidney to a stranger, I was informed that I would be prioritized if I ever needed a kidney transplant. When this assurance was made, I trusted that this promise would be upheld, and I would join other living kidney donors in receiving top prioritization, second only to those who are 100% sensitized. Any change to a lower prioritization would be a serious violation of the trust which all living donors have placed in the system. The number of living donors has declined 7% in the past 20 years while the number of those needing kidneys has gone up 50% during that time. By deprioritizing living donors, the number of those who die from the kidney shortage will increase even further. Please continue to ensure that living donors are prioritized for a transplant at the current level. Protecting living donors after we give life is a promise that should be upheld in perpetuity.

Jon Christensen | 03/13/2023

While I think the intention of the continuous distribution model is commendable, I'm not sure if this is the correct iteration of it. I understand that it's never easy to rank people whose lives depend on the ranking they receive. I don't envy the professionals whose job that is. I also understand that some kind of ranking system needs to be in place in order to facilitate the most lives changed/saved. Personally, I don't think the best system has been created yet. That said, I think there need to be measures in place to encourage living donation as a primary source of transplants. Deceased donors, as great as they can be, simply aren't meeting the need. So the focus needs to be on getting more living donors. The proposed framework for continuous distribution seems to work contrary to increasing living donors. As a living donor myself, I don't want special treatment. That's not why I chose to donate. However, knowing that my donation would help me receive a transplant should the need ever arise was comforting and a fairly significant factor in my choice to donate. I feel like some kind of protection needs to be maintained for living donors. Should we get put to the top of the list automatically? I don't know. But in order to facilitate more donations and help more people, there needs to be a focus on living donation. Therefore, whatever decision is made it should be made with the aim of increasing living donors. I don't believe the proposed update accomplishes that goal.

Kathie Neyman | 03/13/2023

I am a recent, non-directed kidney donor. One of the considerations that gave me peace about donating a part of my body to a stranger, was the assurance that should I ever need a kidney, my need would be prioritized. Honestly, I would have never donated without this assurance. By removing this assurance to would-be donors, I can assure you that the potential pool of living donors will be markedly reduced which will cause the waiting time to lengthen for those who need a kidney.

David Shabtai | 03/13/2023

I am an altruistic kidney donor; I met my recipient on the morning of the transplant. Living kidney donation is safe and is the most effective way to help patients in desperate need. At the same time, there simply isn't enough of it. We need to figure out ways to mainstream living donation, to teach people that it is very safe and that living donor live full, healthy, and complete lives. I'd even venture to say that most living donors would say that their lives are even more fulfilled after having donated. There are a lot of barriers to living donation and we need to figure out ways to remove them. One of those barriers is the concern that a living donor may one day need a kidney themselves. It's not very likely, but it is a very valid concern. A simple way - which has been the case up until now - is that former donors would be given priority, should they ever need an organ transplant. This new proposal would change that. The result may be fewer living donations, would would result in fewer lives saved. Former kidney donors make up a miniscule number of those who may one day need a transplant - and so prioritizing them for that rare eventuality - would not burden the system. A the same time, it removes an additional disincentive to donating. The continuous distribution system makes a lot of sense. It is fair, equitable, and more effective. Let's keep it that way by assigning many more points for former donors. This will benefit the system as a whole, patients on the waiting list, and recruit more living donors. It's a win-win all around.

David Potete | 03/13/2023

I donated a kidney July of 2017. One of the most blessed days of my life. My recipient was given 3 years to live. She has had over 5 wonderful years to watch her daughter grow up. I see nothing in this proposal to encourage living donors. In fact, it does the opposite. Do not say that you are advocating for more people to be living donors if you put this proposal in place. I do ot see how this encourages anyone to be a living donor. Other living donors have been more gracious than I in expressing our concerns. If this reduces the ranking of living donors, then the entire organ donation system will have flat out lied to me and thousands of living donors. Being assured of being higher on the list if we living donors ever needed a kidney was a HUGE selling point for my family to be on board with me donating a kidney. You speak of equity for candidates on the wait list. Living donors do more than anyone to make donations equitable - we gave one up for someone else. On page 15 one of the required criteria for any proposal “Shall be designed to avoid wasting organs, to avoid futile transplants, to promote patient access to transplantation…” Removing the incentive of being high on the transplant list for living donors will reduce the number of living donors. The effect will be the opposite of promoting access as there will be fewer kidneys available. I realize that anyone in need of a kidney wants to make as many available as possible. Living donors have done their part to make this happen. And outcomes with living donors are way better than outcomes with deceased donors. It seems to me that many of the goals of this study could still be attained without sacrificing the promise made to living donors.

Frederic Bullock | 03/12/2023

As a living kidney donor and a mentor to scores of potential living donors I'm writing to express a fundamental concern about the considered change from sequencing to continuous distribution. Donating an organ is an expression of the trust and faith, in the medical professionals, the institutions involved in transplant and the organizations that set transplant policy. The single question on the mind of every potential donor I speak with is “What happens if something goes wrong with my remaining kidney and I need a transplant?” The answer has always been clear and unambiguous - you will be at the top of the prioritization, second only to those who are 100% sensitized. While we don't know where a living donor will end up in the proposed continuous distribution model, any change of being at a lower prioritization would be a fundamental breach of the trust and faith which these donors have placed in the system. We need to encourage more living donation, and any such change would effectively serve to diminish the number of living donations. Please ensure that living donors are not subject to prioritization at a lower level than they currently receive.

Leticia Rodriguez | 03/12/2023

I was a living donor in 2011. I believe potential donors would be less likely to be living donors if they were not guaranteed to be on the priority list if their remaining kidney would start to fail. As a living kidney donor advocate, I would be the first to advise others not to donate if they were not promised priority. I donated my kidney to save my friends life. I also donated because of the assurance that as a living kidney donor I would be on a priority list if my remaining kidney would be failing. This was almost the case in 2020, at the beginning of the pandemic, when was diagnosed with Severe Sepsis and Stage 3 kidney failure. Fortunately, for me, I have always been in good health, the reason I was an exceptional living kidney donor, and received exceptional care at the same kidney transplant hospital where I donated my kidney. Knowing that because of my living kidney donation, I would be on a priority list was comforting when I was hospitalized for Sepsis due to a septic infection due to a kidney done in my remaining kidney. Please continue to prioritize living kidney donors. If not, I will be the first person in my community to contact the local media & post this disgraceful action by UNOS in social media world-wide.

Leslie Fowler-Grabowski | 03/12/2023

In 2013, I heard that my friend's husband was going on the transplant list. As an RN and former Donor Coordinator an an OPO, I immediately said that I was willing to be tested to donate. For two years, my potential recipient said "thanks, but no thanks" because he was worried about the impact on my health, both at the time of donation and in the future. Two years later, with no deceased donor in sight, my recipient changed his mind and was willing to have me to be tested. One of the things that changed his mind was the reassurance of his own coordinator that should I ever need a transplant myself, I would go to the top of the list. When I approached my husband about the possibility of donating, he was initially hesitant, but again, the promise of “jumping the queue,” should my remaining kidney fail, swayed him. Although that perk was not the deciding factor in my decision, I was comforted by the knowledge of this. Statistically, very few kidney donors need a transplant following donation, and I do not understand how a change to the current policy would benefit potential recipients. On the contrary, it may well result in a precipitous drop in the number of people who are willing to become living donors. Living donors are asked to undergo major surgery and removal of a body part, yet this change seems to indicate that the attitude of the OPTN is “thanks for the kidney, now get lost.” Is this the message that you want to convey?

Diane & Mike Kuffler | 03/12/2023

We are parents of a “candidate/patient” and we have experienced the challenges of what is entailed here. There are medical staff which are phenomenal and to whom we will always be eternally grateful and then there are a few about which we could not say the same.

Thoughts about the new Continuous Distribution of Kidneys and Pancreata: After watching the prepared presentation of “Continuous Distribution of Kidneys and Pancreata Concept Paper”,

I and my husband had a few thoughts and questions. A good understanding of the current system with it’s “hard boundaries” needs clarification, in order to reveal the benefit of the proposed changes. The categories by sequence are apparently faulty and the new Continuous Distribution would benefit candidates/patients in what way? It is stated that the new approach would be more equitable.

The numeric assessment and value are reliant on the “worker”, I presume this would be medical staff of some sort. The objectivity of medical persons is the base of the assessment for candidates/patients if I understand this correctly.

o How is accuracy for the attributes going to be promoted? Will there be separate assessments done by methods which promote accuracy, objectivity and fairness?

o Who will benefit from these changes and how:

 candidates/patients

 medical care staff

 insurance companies

 living donors (past, present and future)

 medical for-profit services

 Medicare/Medicaid

 taxpayer

o Will candidates/patients with high antigen levels, blood types and/or those with hard to match criteria be at the top or bottom you the new proposed value allocation? In other words, is this a “save the many easily matched” sort of program?

o What about the human side of this, we’re talking about people here, not a gambling model based on science. How would the adjustments be processed to accommodate the timeliness of care and all the unique needs of everyone involved?

“If” this truly an equitable, fair and impartial “with” heart and compassion for candidates/patients, donors and their families which “will deliver” medical care of high quality to all, then we support this.

Thank you for considering these thoughts and questions.

Anonymous | 03/12/2023

Thoughts about the new Continuous Distribution of Kidneys and Pancreata: After watching the prepared presentation of “Continuous Distribution of Kidneys and Pancreata Concept Paper”:

I and my husband had a few thoughts and questions. A good understanding of the current system with it’s “hard boundaries” needs clarification, in order to reveal the benefit of the proposed changes. The categories by sequence are apparently faulty and the new Continuous Distribution would benefit candidates/patients in what way? It is stated that the new approach would be more equitable.

The numeric assessment and value are reliant on the “worker”, I presume this would be medical staff of some sort. The objectivity of medical persons is the base of the assessment for candidates/patients if I understand this correctly.

o How is accuracy for the attributes going to be promoted? Will there be separate assessments done by methods which promote accuracy, objectivity and fairness?

o Who will benefit from these changes and how;

 candidates/patients

 medical care staff

 insurance companies

 living donors

 medical for-profit services

 Medicare

 tax payer

o Will candidates/patients with high antigen levels, blood types and/or those with hard to match criteria be at the top or bottom you the new proposed value allocation? In other words, is this a “save the many easily matched” sort of program?

o What about the human side of this, we’re talking about people here, not a gambling model based on science. How would the adjustments be processed to accommodate the timeliness of care and all the unique needs of everyone involved?

We are parents of a “candidate/patient” and we have experienced the challenges of what is entailed here. There are medical staff which are phenomenal and to whom we will always be eternally grateful and then there are a few about which we could not say the same.

“If” this truly an equitable, fair and impartial “with” heart and compassion for candidates/patients, donors and their families which “will deliver” medical care of high quality to "all", then we support this.

Micki Schneider | 03/12/2023

As a living kidney donor my agreement to proceed with the surgery was greatly influenced by the assurance that should I need a kidney in the future I would be prioritized for a transplant. Had that issue not been addressed I would have not proceeded. As time has gone on however and I am now in my late seventies with health issues not related to my kidney I would consider deferring a transplant to a younger recipient should I need one if it meant that a life other than my own was in imminent danger. Perhaps such an option could be included in the final report. Thank you for allowing me this opportunity to express my concerns. In no case should living donors lose their priority as first on the recipient list. This would cast a pall on soliciting donations from healthy donors.

Rock 1 Kidney | 03/12/2023

Before I donated a kidney to my husband in 2012, I was surprised by how much fear people expressed when they'd hear I'd been approved as his donor. “Can you still hike?” “Could you have children?” “Will you live as long?” So I created a nonprofit called Rock 1 Kidney that shares ways kidney donors are rocking one kidney since donating. But sadly, there are still so many Americans dying every day while waiting for a life-saving transplant. It’s a big decision to undergo a major surgery and donate a piece of your body to someone else. We need to make it easier for people to step up and save a life – not harder. One of the biggest reassurances potential donors have – and their loved ones, who often try to dissuade them from donating out of concern – is knowing they’ll move to the “top of the list” should their remaining kidney fail. Please don’t remove this important safeguard – not only would it break a promise to organ donors, but it would prevent people from donating and cause needless deaths. Please do the right thing.

Emily Polet-Monterosso | 03/12/2023

We know that living kidney donors are statistically less likely to need a kidney transplant down the road due to their health upon donation. Therefore, continuing to prioritize donors to receive kidneys in the unlikely event that they need one will not substantially impact access to kidneys for other demographics of people on the waitlist. However, for the unique donor in question who does find themselves in need of a kidney, what a terrible situation to discover that the benefit they were promised when they elected to donate was no longer available to them! I am in favor of UNOS upholding the commitment that has already been made to thousands of donors and continuing to prioritize donors in the event that they need a kidney transplant.

Anonymous | 03/12/2023

See attachment.

View attachment from Anonymous

Armand Halter | 03/12/2023

As a Kidney Transplant Recipient and Advocate for the National Kidney Foundation and a Volunteer and Mentor for Kidney Solutions, I am always trying to increase the number of living donors to help close the gap. One of the big reassurances that are currently guaranteed to living donors is if a family member is in need of transplant in the future, that that family member should jump to the head of the waiting list. REMOVING THAT GUARANTEE WILL DISCOURAGE ORGAN DONATION AND HELP WIDEN THE GAP BETWEEN NUMBER OF PATIENTS AND NUMBER OF LIVING DONORS. This results in a long term loss.

National Kidney Registry | 03/12/2023

I am the Founder/CEO of the National Kidney Registry (NKR) and a living kidney donor. The NKR is the largest paired exchange program in the world and works with 100+ U.S. transplant centers to facilitate over 1,000 living donors transplant per year. First, I would like to clarify that the #1 matching priority for the NKR is living kidney donors who have previously donated in an NKR swap. This NKR matching priority supersedes all other matching priorities and will NEVER change. To date the NKR has facilitated over 7,000 living donor kidney transplants and not a single donor has returned in need of a kidney transplant. This demonstrates that living donors rarely need a kidney transplant and living donor prioritization protection comes at a very low burden to the system. Second, according to Figure 3 of the OPTN’s proposal, prior living donors will receive only 10 points toward the composite allocation score. This proposed point allocation for living donors should be increased to at least 10,000 points to clearly communicate to living kidney donors and potential donors that they will be protected in the unlikely event that they ever need a kidney transplant after donation. Third, the greatest opportunity facing the OPTN is the thousands of organs that are discarded every year. The vast majority of these discarded organs are kidneys. Any proposed change to the OPTN kidney allocation policies should aim to reduce the discard rate by at least 50%. Actionable initiatives that will reduce the kidney discard rate are outlined in our 2019 letter to the OPTN (link below). www.kidneyregistry.org/wp-content/uploads/2021/03/OPTN-Response.pdf

View attachment from National Kidney Registry

LIVING KIDNEY DONORS NETWORK | 03/12/2023

Prior living donors should be concerned about changes in the allocation of kidneys if they will receive less priority under the new system. Did the OPTN Kidney and Pancreas Transplantation Committee make any projections that compare how long a prior living kidney donor would wait for a kidney under the current system and how long they might wait based upon the planned changes?

Janice Wirtz | 03/11/2023

I was a non directed kidney donor in 2016. One of the deciding factors in going forward with donation was the fact that if I needed a kidney in the future, I would go to the top of the list. If I did not have this reassurance, I probably would not have donated since the kidney was going to someone I didn't know. By taking away this reassurance, you will be taking way potential living donors. Aren't living kidneys more successful when implanted? We don't have enough living donors now and you want to decrease that number? And what about the living donors who gave because a loved one or friend was given a voucher? Is that going to be taken away too?

Shmuly Yanklowitz | 03/11/2023

Hi, Thank you for all the great work you all do. I wanted to share a concern. So many of us had been promised, as living kidney donors, that we'd be on the top of the list if we had a need for a transplant. Now it seems that may change? But many of us donated based on the assumption of that promise. I have taught for years (and written a book) on the subject, and I've engaged many others to be living kidney donors based on that promise. Please don't abandon us all. Please don't dissuade countless others from potentially donating in the future because they will have lost this protection. Thank you, Rabbi Shmuly Yanklowitz

Anonymous | 03/11/2023

Prior living donor (for kidney and liver) needs to be a trump card factor, placing those individuals above all other recipients. These heroes voluntarily donated, and were intensively screened for initial and prospective good health. Their need represents unusual misfortune or screening failure. EXISTING LIVING DONORS HAVE BEEN PROMISED THIS PRIORITIZATION. Future living donors will be disincentivized if this is one among many factors. These donors graciously provide a higher quality organ than any deceased donor. As a potential recipient, I feel living donors ethically and practically deserve our highest gratitude and priority. Living donors are the area of greatest potential donor growth, PLEASE DON’T SCREW IT UP!

Barb Garofola | 03/11/2023

I agree with the many excellent responses regarding the proposed changes. I can personally add that my dad accepted my kidney donation BECAUSE he understood that his only daughter would receive priority if in need. As it so happens, my solitary kidney has fallen to Stage 3A CKD, and I'm still in my 50s, which makes a transplant a possibility in my future. Altering the promises made to families like mine will cause living donations to decrease, and that will cost lives. What a dishonor to my beloved dad's memory.

Anonymous | 03/11/2023

Donating a kidney is an expression of the highest trust possible: trust in the medical professionals, the institutions involved in transplant, and the organizations that set transplant policies. The single question on every potential living donor's mind for donation is “What happens if something goes wrong with my remaining kidney at some point in the future, and I need a transplant myself?” The answer has always been clear and unambiguous - you are at the top of the prioritization, second only to those who are 100% sensitized. We don’t know where a living donor will end up in the proposed continuous distribution model, but any change to a lower prioritization would be a grave violation of the trust these donors have placed in the system. Any such change would have an immediate and deleterious effect on efforts to encourage living donors. We urge you to ensure that living donors are not subject to prioritization at a level below where they are currently.

Anonymous | 03/11/2023

As you can see by the many comments that have been posted, this has generated a lot of controversy and concern within living donor networks. I note that the site that describes the continuous distribution process lists as one of its goals "Increase transplant opportunities for candidates with distinct characteristics like candidates under the age of 18 or prior living donors." And it is possible that the proposed system would do that. But the lack of transparency, and the difficulty in explaining to laypeople how it works is a real problem that I do not believe has been taken seriously enough. If you want people to be living donors, you need a clear and accurate message about what will happen if their remaining kidney fails. In the past, we've been told that we'd "go to the top of the list." This was clear, but may not be accurate anymore (and may not have been fully accurate in the past). If you can't give people a clear and accurate message, people will be afraid to donate. I also urge you to think about the impact on future donations as well as the immediate recipients. Even just a few stories about someone who previously donated dying while waiting for a kidney would significantly impact the universe of people willing to donate, which would hurt everyone waiting for a kidney. Thank you for your consideration.

Anonymous | 03/11/2023

I would like to stress the importance of keeping living donors at the top of the priority list for organ transplants. A living donor is someone who saves the lives of strangers by giving a piece of their own body. These living donors do not ask for anything in return, not even a thank you. These living donors also take the risk of endangering themselves, when they give away a part of their body. We should be doing everything we can to protect living donors who have so selfishly helped other. There is a huge shortage of living donors already. Why would policy makers want to discourage living donors even more giving them lower priority if they will need an organ transplant in the future. Please do not change any policies that will affect living donors receiving top priority for organ transplants.

Anonymous | 03/11/2023

Although having a system that considers several attributes seems fairer, I am very concerned about the proposal that greatly reduces the priority weight of a prior kidney donor. Living kidney donors have paid it forward and have been promised to be placed “at the top of the list” if they ever needed a kidney themselves. Do you know how hard it is to find a living donor? It’s very important to make it EASIER for someone to donate to save more lives. Living donations reduce the number of people on the deceased list, and are better for the recipient’s health! I know because I have a kidney from living donor and it took me more than two years to get one with a personal loss of privacy of my medical condition.. I know that the promise of being prioritized was a factor in my donor’s decision. Please don’t breach the trust of those who donated! Please don’t take away this “perk” which balances out some of the inconvenience, pain and bravery required to donate a living organ for past and future donors. Relatives of the potential recipient may want to give but the recipient may not want to accept the relative’s kidney if this protection is not assured.

Rob Lee | 03/11/2023

In a time where the transplant community is working to decrease donor disincentives and encourage more loving donation to decrease the kidney “shortage”, this is a massive step backwards. Not only is this a huge disincentive for future donors, but a slap in the face of the many who have donated a kidney and we’re “promised” exactly what you are planning to take away- basic security in knowing they will be taken care of by the very system they risked so much to contribute to. And for kidney patients waiting for transplant- the very group this organization claims to be helping- how will this benefit them? Decreasing the number of living donors and in turn, becoming more reliant on a pool of deceased donors that is already deemed in short supply. I must ask, who is ultimately behind this? Dialysis centers? Are they lobbying for this behind the scenes?

Susana Guarino | 03/11/2023

I’m here today due to two heroic individuals. My live kidney donors were my sister and nephew. At the time they donated they just wanted me alive and we’re not thinking about themselves in the future should they ever need a transplanted organ. But as hard as it was for me to accept these gifts I was comforted by the fact that if they ever needed an organ they would be at the top of the list. Living donors must remain at the top of the list forever!!! I think that's the ethical thing to do. Please continue prioritization for all past, present and future living donors. Thank you

Terri Thede | 03/11/2023

As a living kidney donor and Vice President of the National Kidney Donation Organization, I want to share my concern connected to the proposal for Continuous Distribution of Kidneys and Pancreata. When I donated, one of the assurances received by me and my family was that in the case I ever needed a kidney transplant after donating to a stranger, that I had the protection of prioritization for a deceased donor kidney. To have that assurance removed seems unjust and is very concerning. I am hopeful that reconsideration is given to this proposal. Living donors already make financial sacrifices to give the gift of life - please don't take away the protection of deceased donor prioritization.

Laurie Lee | 03/11/2023

I am a non-directed kidney donor who takes comfort knowing that in the rare chance I need a kidney in the future, I will be prioritized for transplant. This was promised to me at the time of my donation, and it would feel like a major breach of trust if this were to change. It would be unethical to break this promise made to thousands of people. The cost of changing this policy to one that would provide less priority to living donors is enormous. Please consider the impact this will have on future donors in making the important decision to donate a kidney. If we want to increase living donation, we need to remove the disincentives, not add to the list that makes it near impossible for many people to seriously consider donation. The number of kidney donors added to the waitlist is so small, so keeping them as a priority shouldn't have a big impact on the waitlist as a whole.

Rhonda Hoerle | 03/11/2023

I donated a kidney altruistically in May 2019. The assurance that I would gain a higher priority on the recipient list was a critical factor in my decision to donate. It offered comfort to my parents, children and friends. Fast forward to 2022, and my son also became a non-directed donor. Had this uncertainty been present then, I would have asked him not to do so. We are now a family of 3 with 4 kidneys between us and would ask the committee to ensure the higher priority to increase the likelihood that other families may choose to donate as we did.

Anonymous | 03/11/2023

In theory this sounds like a good plan. There is a kidney shortage and I think living donors can help fill that shortage. I personally try to educate as many as possible on living kidney donation and how it typically has little long term effect on the donor. However one of the main concerns when you talk to a potential donor about this is, what if I need a kidney in the future. When you present prioritization as the solution this provides relief and security. I donated my kidney to a stranger. Would I have taken this risk this for a family member, most likely. But I would have to consider much more seriously knowing I wouldn't be helped in return if I needed it when I donated to a stranger I think you are taking away a big motivator when I'm sure this is hardly ever even needed. Kidney donors are some of the most healthy people you will meet so please continue to give us the peace of mind, we will be prioritized for a kidney if we should need one in the future.

Amy Plourde | 03/11/2023

As a living kidney donor and advocate for living kidney donation it is essential that priority for living donors to receive kidneys remains the highest priority. Living donors give their spare kidney to help shorten the wait list which benefits everyone else in need of a kidney. Giving living donors “priority” for a kidney in the event they need one is not a “perk” it is a fundamental reassurance. It is a commitment that enables an individual (and their family) to know that giving their organ to another person (at zero benefit to themselves) will not negatively impact them in the future. We cannot tell people there are thousands of people waiting for kidneys and you should share your spare -but oh if you do and something happens to your remaining kidney, well we’ll add you to that list… A change of nature is likely to have a chilling effect on those considering living kidney donation; and at a time when we need all the kidneys we can find, this will be a more damning death sentence to those waiting on the interminable “wait list”.

Logan Brown | 03/11/2023

While in theory I see the merits of the considered distribution model and the barriers it may remove to candidates... however, I have VERY serious concerns over the execution and how this may disenfranchise living donors' right to priority on the distribution list. The committee MUST PROTECT LIVING DONORS'S PRIORITY. Not doing so will have second order consequences that would lead to far few willing donors, which will hurt the already strained system of donation. Protect living and altruistic donor rights and priority!

Holly Armstrong | 03/11/2023

Hello, my name is Holly Armstrong, and I donated my kidney through the National Kidney Registry in October 2020. When I was going through the donation process, I was informed that should I ever need a kidney transplant myself; my donation would ensure me a "move to the top of the list." Also, I donated as a non-directed donor and received five Family Vouchers for my donation. My husband, three children and brother are those voucher holders. I was promised that due to my altruistic donation, that should any of these family members/voucher holders ever need a kidney themselves, that they would be "bumped to the top of the waiting list" due to their status as a voucher holder. Lastly, my kidney ended up going to a woman across the country, whose husband was not a match for her, but he donated using the Standard Voucher program through the National Kidney Registry. He was promised that by donating his kidney, which was not a match for his wife, that she would be given the Standard Voucher and "moved to the top of the list". Thankfully, she was given that promised prioritization and received my kidney one month later.

The wording of the new "Continuous distribution" program seems incredibly vague on the three scenarios I listed above - prior living donors, Family Voucher holders and Standard Voucher holders. I am curious what the "fair" points allocated to these scenarios would be?? In the video, since none of the examples were prior living donors, I'm unclear on how many "points" I would receive should I ever need a kidney. AND, it seems like a broken promise to change the system AFTER I had already donated. Would prior living donors be 'grandfathered' in with their promised prioritization? Would prior family or standard voucher holders also be given prioritization AS THEY WERE PROMISED when their loved one sacrificially donated their organ?

Also, as a Living Kidney Donor Mentor with the National Kidney Donor Organization, I have to worry about the vagueness of this new policy. My role is to mentor future donors and inform them of their rights and benefits, as well as potential risks in donating. Prior to watching your video on the new continuous point system, I had informed my mentees that they would be taken care of if they ever needed a kidney themselves in the future. But now if there is an unclear point system, I could NOT honestly tell them this. I WORRY about the future effect this will have on individuals being willing to donate their organs. I know for me, knowing that I could give my children the gift of a future kidney, if and when they ever needed it, was a major factor in my non-directed gift. And knowing that his wife would be taken care of was a major factor in my husband's support of my donation. When you remove those incentives, many may not continue to donate in the future, essentially hurting the system that you are trying to correct. In addition, breaking promises to those who have been previously promised prioritization - living donors and voucher holders - is a grave mistake and trust issue in the entire system.

I urge you to reconsider this program and to be more clear about the prioritization of living donors and voucher holders. Removing the trust both past and present donors and their families have in the system could greatly affect the future of the entire system. 

Thank you,

Holly Armstrong

Anonymous | 03/11/2023

Since kidneys from living donors are markedly more effective than those from deceased donors in preventing further interventions and associated costs in the care of patients receiving them why introduce a rule change that would eliminate most potential donors from making the donation. I use 'eliminate' instead of 'risk eliminating' because it is a fact that such a rule change would do that. I received a kidney from a living donor last October, this transplant would not have occurred with this rule change. As mentioned already over and over is an unacceptable injustice every prior living donor. In the proposed rule change, Figure 3, it appears that the weight given to prior living donors is hardly 10 points. This proposed rule change will result in much longer wait lists and a very significant increase in the number of patients receiving dialysis.

sarah giller | 03/11/2023

The new system sounds good however, as a living donor kidney recipient, I have some issues with the new system. I believe that if a person chooses to be a living donor that donation should be very heavily weighted to provide them a kidney should they need one in their lifetime, for whatever reason. We want more people to consider living donation and if they are not assured of receiving what they so generously gave, I believe it will impact living donation in the future. Thank you.

Patty Graham | 03/11/2023

I am a non-directed donor, and I donated my kidney to a stranger in 2017. One reason I felt comfortable donating a kidney, without knowing anyone in need, was the assurance that if I ever needed a kidney in the future, I would receive priority as a living donor. My sister, who donated her kidney 15 years before I did, was given this same assurance. Being perfectly healthy, we both went into elective surgery that had zero physical benefits to us, only risks. The promise of prioritization helped us both feel more comfortable with our donations. It’s unbelievable to me, not to mention highly unethical, that I could be given that assurance, donate my kidney, and now there is the threat of losing that security. Not only was that assurance provided for me, but it was also given to my loved ones and family. This change will dramatically decrease the number of people willing to donate their kidneys. More individuals in need will die waiting if you don’t protect those who are selflessly trying to save them. How can I encourage others to donate into a system that doesn’t protect and prioritize them?

Anonymous | 03/11/2023

I am a living kidney donor. I was happy to help a friend in need. A huge part of that decision was the knowledge of my prioritization on the list having become a living donor, should I ever need it. This was a great comfort to my family, also, in supporting my decision. This proposal for continuous distribution allocation is concerning for us who have already donated under the promise that we would get prioritization, and also for future potential donors who no longer have that reassurance. I urge you to consider allowing past and future living donors to continue to get priority they were promised and deserved. Thank you for your consideration.

SKM | 03/11/2023

I donated a kidney as an act of putting something out in the world that would help another person live a longer. I hoped my kidney would give my recipient a better quality of life and more time to create memories with family and friends. The first question I asked myself when considering donation was what will happen if something goes wrong with my remaining kidney. This was also the question my spouse, children and other family members asked me when I told them I was considering being a living kidney donor. The answer I was given by my medical team was that, if I needed a kidney, I would be at the top of the prioritization list, second only to those who are 100% sensitized. This answer provided me and my loved ones with the assurance needed to continue on with the evaluation and donate my left kidney. I feel humbled and so thankful that I was healthy enough to donate my left kidney to help a stranger in need. I highly doubt I would have donated without the assurance, for myself and my family, that if I needed a kidney I had priority. I do strongly think and feel that if the priority policy changes it will essentially put an end to living kidney donors. Please, please, please for the sake of so many people who are in need of a kidney do not change the priority level for living donors.

Brian McDonald | 03/11/2023

In April of 2019, I donated a kidney under the Advanced Kidney Donor program. Generally stated, I donated to a stranger, in advance, because at the time my loved one did not need, nor was she eligible, for a kidney transplant, however it was most probable she would need one in the immediate future. She had suffered from Congenital Kidney disease. (Her right kidney was removed previously, and her remaining kidney was in failure.) My thoughts were to donate then, (to a stranger because I was not a match for my loved one) even if my loved one was not currently in need of a kidney, so that if something should happen to me and I was no longer “available” to donate, she would still receive a kidney due to my prior donation. She was promised priority; essentially receiving a voucher, and given priority due to my advanced donation. It is unclear to me how the proposed changes would affect this program. I can assure you that if my loved one was not prioritized I would not have donated in advance. As to myself being prioritized, should my remaining kidney fail, it played no factor in my decision to donate. However, as those that have been through the process know, there is a great deal of emotion involved in the process of kidney donation, not only by the donor, or the recipient, but also the families of both. The recipient can undergo a tremendous amount of psychological guilt, having “taken” a kidney from someone. The families of the donor may attempt to dissuade the donor because of their concern for the future health of their family member. Could you imagine the animosity that may result between the family of the donor and the recipient, as well as the recipient’s family, should the donor’s remaining kidney fail and was unable to receive a kidney transplant in a timely manner, perhaps years on dialysis. Knowing that the donor would be prioritized should something happen to their remaining kidney would, I believe, go a long way in ameliorating these concerns. Eliminating this policy may contribute to the overall psychological ramifications of kidney donation, and could be deleterious if not disastrous. Please consider this has you proceed forward with these changes.

Katharine Carney | 03/11/2023

As a non-directed kidney donor in March 2016, and a current living donor advocate, I feel strongly that the continuous distribution system should not diminish the current level of priority given to living kidney donors. Any decrease in living donor prioritization would be (a) an unethical breach of the commitment given to prior donors; (b) contrary to society/community principles that place a high value on living kidney donors; and (c) counter-productive to increasing the number of living kidney donors so vital to help alleviate the dire shortage of kidneys needed to save Iives.

Jeffrey Gilchrist | 03/11/2023

As a living kidney donor I feel that the potential changes in respect to placing a top priority on the kidney wait list to living donors will provide a disincentive to living donation. This is a particularly puzzling proposal considering that finding living donors continues to be difficult. Living donors should continue to be placed at the top of the waitlist in case they should need a kidney in the future.

Bruce Hanley | 03/11/2023

As a non-directed living kidney donor I'd consider any change in the ranking system that would lower my priority if I needed a kidney a huge betrayal of the trust I've placed in the system. Again and again, as I advocate for the living donor cause or share my story with friends and family, the question inevitably comes up, "what if your remaining kidney fails?". This leads to the relief and understanding of why a person would become a living donor with minimal fear of future regret. There's also a factor that my surgeon explained to me that I thought was powerful. He explained that performing surgery on a living donor is the rare occasion when a surgeon actually does do harm to an otherwise healthy person and therefore in conflict with their oath to do-no-harm. Of course they know it is for the greater good and I would like to think they also keep in mind that living donors are prioritized. To lower that prioritization to me seems to add more conflict to that do-no-harm quandary. I encourage the committee to maintain the prioritization of living donors as it is today but not make the thousands of living donors that have given so generously not feel a victim of a bait and switch scheme.

Ellen Druebbisch | 03/11/2023

I am a living kidney donor who donated at the age of 21, during the start of COVID, to a friend younger than me who needed a kidney. It was an extremely hard decision to make that involved lots of conversations with my family, friends, and most importantly the transplant team. One thing that made me feel very good about my decision is that I could do this great thing for someone knowing that if my remaining kidney failed there would be one for me very quickly. I understand I might be in a smaller portion of the community who donated so young, but to think that for the next 70 years that I would be a priority to receive a kidney, should I need one, was a major deciding factor. I appreciate and understand the need to change distribution of kidneys based on new science and making the process more inclusive, and this can still be done while still prioritizing donors at the top and then allowing the remainder of patients to be ranked on this continuous model. Disregarding donors in their time of need breaks the promises we were given and will likely disincentivize future donors. We don’t need fewer people donating!

Cheri Ruane | 03/11/2023

As an altruistic Living Kidney Donor, I am frustrated to see what this proposal could do to the future of Living Kidney Donation. When I gave my kidney to a complete stranger 6 years ago, I was reassured that if I were to ever need a kidney someday, I would be given priority. To suddenly “change the rules” on this is the very definition of unethical. There is a major shortage of living kidney donors, and to remove one of the few incentives would only serve to further dissuade potential donors.

Fred Kolkhorst | 03/10/2023

Many have been working to pass the Living Donor Protection Act. Now UNOS is potentially reducing the greatest protection given to a living donor. What is wrong with this picture??

Brooke Wozniak | 03/10/2023

As a living donor, I would like to address the possibility of living donors potentially not being prioritized on the donor list, should something happen to my remaining kidney. As living donors, we sacrifice our healthy kidneys in order to save and improve the lives of others. That is not a decision that we make lightly and we have to not only consider the lives of our recipients, but also our own as we move forward with only one kidney. The peace of mind of knowing that, should something go wrong with our remaining kidney, we would be prioritized on the donation list, is huge and could be the difference between someone deciding to be a living donor or not. For what we give, it seems to me that we have earned the right to be top of the list to receive a donation. Please don't take away the one extrinsic benefit that we receive for being living donors and our alturistic act.

Robin Gilmartin | 03/10/2023

In 2017 I donated a kidney at Yale New Haven Hospital to a stranger in need which began an 18-person kidney chain exchange, one of the largest kidney chain swaps in the United States and largest in Connecticut. One question others frequently ask (and I asked myself when considering donating) is “What if your /my remaining kidney fails?” I’ve been able to answer that living donors are given priority if they need a kidney. With the proposed UNOS change, I would need to alter my response to something like, “Well, you take good care of yourself and hope for the best.” This answer doesn’t help the cause. At 67, it also leaves me suddenly feeling more vulnerable. Robin Gilmartin

Martha Gershun | 03/10/2023

I donated a kidney to a woman I read about in the newspaper five years ago. Throughout my evaluation process to become a living kidney donor, I was frequently reassured that, should my remaining kidney fail, I would be placed very near the top of the transplant list. Please do not disrupt this prioritization. Every living kidney donor reduces the demand on the cadaveric kidney supply. The least society can do to encourage these donors - and thank them for their altruism - is to protect their health down the road.

Chantel Hart | 03/10/2023

I am a recipient of a transplant, but i really think yoi shouldn't change priority the people give the gift of life did a very selfless act and deserve to have priority juat like those who have 100%. Getting on the list is hard enough and the wait is even harder. You changing will not only hurt the outcome of someones life it hurts their mental state as well. Please give second thought and listen to those that this affects.

NKDO | 03/10/2023

Like many others who have commented, I am a non-directed living donor who successfully donated a kidney in 2020 (a donation that resulted in two patients getting new kidneys and a new chance at a new life). Although I am a healthy 71-year-old with one healthy kidney, I must admit that knowing that I would be prioritized if my remaining kidney fails in the future was a major factor in my determination to go forward with donation. I believe it is a breach of trust to now change the system and not allow for prioritization of living donors should they need a transplant in the future. Yes, almost all donors are healthy people who will not need a new kidney to replace their remaining one, but this proposed change will dramatically decrease the number of living kidney donors who decide to give one of their kidneys. If the "safety net" of future prioritization is removed, a significant number of possible transplants from living donors will no longer occur. Please reconsider this decision and carve out an exception for living kidney donors.

Johnna Knabe | 03/10/2023

As a living donor recipient whose donor is a close friend, I am extremely concerned that being a living donor is only a factor in determination of placement on the wait list. My donor, just like all other living donors were promised priority on the wait list in the event that their remaining kidney should fail. The current proposal does not guarantee or place sufficient weight for living donors to continue to get that priority. During a time when many people are working to break down the barriers that disincentivize living donation, it is the wrong time to go backwards on the one incentive of that gives living donors the piece of mind when making their donation. I urge the committee to guarantee that all living donors are given the priority on the wait list that they deserve for their physical sacrifice.

Dorlee Martin | 03/10/2023

As a Nondirected Living Kidney Donor, I am frustrated to see what this proposal could do to the future of Living Kidney Donation. When I gave my kidney to a complete stranger 4 years ago, I was reassured that if I were to ever need a kidney someday, I would be given priority. To suddenly “change the rules” on this is the very definition of unethical. There is a major shortage of living kidney donors, and to remove one of the few incentives would only serve to further dissuade potential donors.

Kelly Berwager | 03/10/2023

As a living, non-directed donor, I never considered whether or not I would get a kidney in the future, should I need one, but it was assuring to know I would be assured of getting one because I was a kidney donor. I also understand prioritizing people based on how long they might live after transplant, but based on the information provided in the videos it also sounds like ago would be a factor in this new system. Those of us who gave/give have no idea what our future holds. All we can do is do what we can control and live a clean & healthy life. Worrying that I might not "make the cut" in the future by being older makes me question the priority hospitals give living donors. If people know they may not be prioritized based on their age, they might not continue with the donation process. It's hard enough to get people to donate now, what will it be if people think they might not be prioritized should they need a kidney in the future?

Chris Kuhr | 03/10/2023

The proposal for continuous distribution allocation changes significantly impact regions with large geographic regions and may have the unintended consequence of increasing the discard rate further (we’ve seen this with recent allocation changes). Emphasis on decreasing discard rates and improving OPO efficiency will improve the OPTN overarching goal of increasing organs transplanted and thus lives saved.

Michael McDaniel | 03/10/2023

As a recent living kidney donor I would like to stress how knowing I would be prioritized in the event I may someday need one myself weighed heavily on my decision to donate. I strongly feel that this prioritization needs to remain in place. Any downgrade from this status would surely have a detrimental effect on future living donor prospects. We need to do all that we can to encourage living donor participation. Thank you for your consideration.

Anonymous | 03/10/2023

I am an altruistic double living organ donor (kidney and liver). I very happily made these donations to save the lives of my recipients and the other members of the donation chain. But a critical part of my decision was that if I needed a kidney in he future, I knew I would be prioritized. That made me feel safe and secure in my decision to donate. I do not know that I would have donated if I did not have that reassurance. I mentor many potential living donors and spread the word about living donation often and that is the #1 question I receive - "what if your remaining kidney fails in the future?" This proposal's silence on living donors concerns me greatly because: 1) current living donors who donated with the understanding that they had a safety net in the future will not have that promise honored and 2) future potential living donors will be scared away from donating and saving lives, which is directly counter to the purpose of this proposal.

Linda Carlson | 03/10/2023

After reading an article entitled "You have two. Share your spare." I was moved to the point of altruistically donating my kidney to a stranger on 9/11/2019. At the time, part of my decision to donate was that if I ever needed a kidney, I would be placed at the top of the list to receive one. That was very important to me as I would now have only one kidney for the rest of my life. Hearing that that "promise" may be taken away is very scary. I'm not sure how often it actually happens, but not having that "promise" as a selling point to encourage others to become living kidney donors, I feel, will hinder the progress that's been made in increasing the number of living donors, thus saving lives. In my opinion, and for all the people on dialysis waiting for a kidney, that doesn't seem like a wise decision. We want more people to share their spare, not less!

Steven Kuhn | 03/10/2023

I have not had an opportunity to thoroughly research the proposal, but, as a non-directed living donor, I would feel quite betrayed if any decision were made that would result in my having a lower priority on the transplant list should I ultimately need a kidney myself. This would seem to be too obvious to need stating, but I gather that there is some possibility that this is being considered. Please utilize some common sense and refrain from such a counter-productive revision. We do not want to provide the public with reasons NOT to become living donors. Thank you.

Molly Amell | 03/10/2023

I am a living kidney donor. I gave my kidney to a stranger at age 24 as an unpaired donor, just wanting another healthy kidney available to someone who needs it.

I am extremely in favor of making living donation as easy as possible for anyone considering it.

I fear that reprioritizing allocation for living donors who may need a transplant in the future will needlessly limit an already shallow pool of prospective donors. Please reconsider this proposal; we don't need another hurdle in the process.

The idea that I would be quick to receive a transplant should my existing kidney fail me down the line was a major relief to my family and partner, who didn't want me to take too big of a risk for someone I didn't know.

Let's make it clear that we have our living donors' backs. We need so many more than we have.

Anonymous | 03/10/2023

I had a non-directed kidney donation just over a month ago. While I do not expect to need a kidney in the future, it is a nice to have the peace of mind knowing I would be prioritized if that ever was the case. I do not know my recipient and still would have donated regardless, but I can see this reducing live donor participation, especially in the non-directed space.

Anonymous | 03/10/2023

Each year thousands of people wait for a kidney donation and die waiting. As an advocate for living kidney donation (and donor myself) it is REALLY important that living donors know they will be placed at the top of the donor list if something should happen to their remaining kidney. It is a GREAT sacrifice to donate and if people don't feel confident that they'll be taken care of quickly after donation, you will see the number of living donors decline and lose more people waiting for donation.

Connie Bolle | 03/10/2023

My voice is not mighty, but it's very important. My name's Connie and I am a Living Kidney Donor from April 2021. I donated one of my healthy kidneys to a stranger, risking my life to help someone else in need. One key bit of information shared with me while I was considering this life altering surgery, was that should I need a transplant in the future, I would be prioritized and recognized for my donation.

With the potential changes from sequencing to continuous distribution, I am now at a greater risk of death from my act of kindness. I worry that future Living Kidney donors may back out of the opportunity, as none of us have a crystal ball, knowing we will not need our second kidney.

Please reconsider this update. So many of us risk so much to support others, as Living Donors, and I would hate for more kidney patients to lose their battle waiting for a donor.

My voice should be heard. Living Donors should be considered a priority. Thank you. Connie

Kayla Taylor | 03/10/2023

I am writing to provide feedback on the newly proposed distribution process for kidneys. I recently donated a kidney as a non-directed donor, and a vital component of this personal decision was the knowledge that as a living donor I would be prioritized for a kidney transplant in the event of the failure of my remaining kidney. I believe it is critical to continue this practice both to uphold this implicit agreement but more importantly to maintain the recent momentum in the living donor pipeline. Without this reassurance my family would likely not have been supportive of my decision, and therefore, I’m not sure I would’ve made the same decision to donate. I hope that for the sake of encouraging future living donors that the provision to prioritize living donors continues to be explicitly documented in the distribution process.

Anonymous | 03/10/2023

I am incredibly concerned about the prioritization of living kidney donors under the new update. As a living kidney donor, I donated anonymously to an unspecified recipient- completely altruistically. There was nobody I knew that needed a kidney. I know how grave circumstances may be for an individual on a very long transplant list and wanted to give someone a chance at a healthier and longer life. I understood the risks of donation but I also was assured that, in the rare case my remaining kidney fails, I would be prioritized for a transplant. It is a huge mistake to alter this as living kidney donations are already barely scratching the surface of the transplant list. If we are to encourage more living donations, removing protections for those people who have sacrificed so much already is incredibly inhumane.

National Kidney Donation Organization | 03/10/2023

As Chairman of National Kidney Donation (NKDO), I am writing to express the concerns which our organization and membership have about the considered changes from sequencing to continuous distribution. NKDO is the largest living donor advocacy organization in the country, and we devote our energy to reducing disincentives to living donation.

When someone donates a kidney, the act is an expression of the highest trust possible, trust in the medical professionals, the institutions involved in transplant and the organizations that set transplant policy. The single question on the mind of every candidate for donation: “What happens if something goes wrong with my remaining kidney at some point in the future, and I need a transplant myself?” The answer has always been clear and unambiguous - you are at the top of the prioritization, second only to those who are 100% sensitized.

We don’t know where a living donor will end up in the proposed continuous distribution model, but any change to a lower prioritization would be a grave violation of the trust which these donors have placed in the system. We are all trying to encourage living donation, and any such change would have an immediate and deleterious effect on living donation.

We urge you to ensure that living donors are not subject to prioritization at a level below where they are currently.

Anonymous | 03/09/2023

When I donated a kidney 28 years ago, the sole reason was because someone I loved and cared for needed it. In the ensuing years I became very involved in the transplant community, focusing primarily on living donor promotion. When I speak to groups (primarily young, high-school aged kids) I share the promise made to me those many years ago: If I ever needed a kidney, I would receive a priority position on the wait list. I was surprised at how much this meant to those young people. At a time when the need for living donors is so great, I question the removal of that priority listing. I would be interested in knowing just how often that priority listing has been used and the subsequent impact it has had on the overall data. I believe an inordinate amount of time and effort has been put into a proposal which will provide little or no improvement to the existing procedures.

Region 9 | 03/09/2023

During the discussion, an attendee stated that the number of living donors for children has gone down, and we need to incentivize priority for living donors too. Another member remarked that they believe this is a monumental amount of data, analysis, and time for minimal improvement and possible unanticipated consequences. One member said this seems like a reasonable proposal. Another member felt like the logistical difficulties that currently exist and contribute to non-utilization of organs would be exacerbated by continuous distribution. 

OPTN Ethics Committee | 03/08/2023

The OPTN Ethics Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for their update and the opportunity to provide feedback. The Committee is supportive of continuous distribution to improve equity and efficiency. The Committee suggests that the Kidney and Pancreas Committees keep the following considerations in mind.

First, the Ethics Committee is supportive of priority for living donors. The goal of continuous distribution is to avoid allocation decisions based on single variables, however, prior living donation carries ethical weight more so than the other medical factors. The Committee suggests that the Kidney and Pancreas Committees keep in mind the altruism and self-sacrifice of the living donor as perhaps a separate factor than the other continuous distribution attributes to ensure living donors receive priority. This said, given what we know about living donors in the US, expanded priority for prior living donors may increase racial and socioeconomic disparities. Therefore, the prior living donor attribute should be modeled and carefully balanced by the Committees. Additionally, the Committees should keep in mind the impact of the perception of “changing the rules” for those who have already made a living donation on public trust in the system.

Second, the Committee noted the lower kidney transplant rate for Black candidates on dialysis 5+ years and highly sensitized candidates, as well as regional differences in transplant rates as perpetuating or adding to existing disparity in access to transplantation. Third, one area for clarification or additional modeling would be the additional points given to 0-DR mismatch candidates, and if points given to these candidates will or will not inadvertently disadvantage others. Finally, one additional area for Committee consideration in the transition to continuous distribution is the role of the provisional yes and challenges related to kidney allocation faced by smaller OPOs. 

American Nephrology Nurses Association (ANNA) | 03/08/2023

See Attachement

View attachment from American Nephrology Nurses Association (ANNA)

Michael Lollo | 03/08/2023

I donated my kidney to a stranger back in 2018. One of the things I was told by my center, was how I would get priority on the deceased donor list if I should ever need a kidney in the future. Although I am aware that it is very unlikely it would ever happen, it gave me great piece of mind. Since 2018 I have advocated for living organ donation and mentored hundreds of donor candidates. Knowing that you will be highly prioritized on the list is very comforting for all living donors. Living donation in the US has remained flat for the last decade. Living donors go in for a surgery to help or save another with NO tangible benefits at the completion. OPTN should be looking for ways to help increase living organ donation, not reducing the priority points or level of living donors. Of course I am bias, being a living donors myself but should I ever need a kidney the least that I would expect is to be a top priority for an organ since I gave one of mine away. I strongly encourage you to rethink this approach. Lets help increase living organ donation, not change policy that will undoubtably decrease living organ donation.

Anonymous | 03/07/2023

Living Donors have given the gift of life! Their act was a complete act of kindness and this should be honored and considered with any future decisions. They have been told that they would go to the top of the transplant waitlist should they need a transplant. While this is in no way related to the compassionate reason they donated, it would be unethical to remove this fact. It is my understanding that the number of prior living donors added to the waitlist is small, so keeping them as a priority shouldn't have a big impact. Please consider the future of living donation that saves the lives of so many. A Living Donor deserves to be honored!

Transplant Trekkers | 03/07/2023

Both my family and I took UNOS at its word 22 years ago when I decided to donate my kidney to a friend. And that word was "yes". Yes, you go to the top of the wait list. The very last thing UNOS should do is alienate yet another group, living donors, who represent a significant percentage of kidney transplants. You claim to be the organization entrusted to distribute organs. At its root, your mandate to do so rests on trust. No quicker or more public way to lose it is to go back on your word by removing the priority listing living donors were promised when they donated.

Nancy Marlin | 03/05/2023

I support the concept of continuous distribution, but I am extremely concerned about the weighting of prior living donors for five reasons:

1. Living donors compassionately and voluntarily gave the gift of one of their own organs. They underwent surgery that had no direct benefit to them - only risks. There is lots of talk about of "honoring donors", but the tangible way to do so is to assure they receive highest priority should they subsequently require a transplant.

2. We told living donors that they would go to the top of the transplant waitlist in the rare event that they should need a transplant. To now change the policy and betray that promise post-donation is extraordinarily unethical.

3. Assuring living donors that they would be cared for by the transplant system should they need an organ reduces one of the barriers to donation; not doing so increases a barrier to donation. This prioritization is also very reassuring to the donor's family, who is usually involved in the donation decision, and are deeply concerned about what would happen should their loved one require a transplant.

4. Gratefully, the number of prior living donors added to the waitlist is very small, e.g., only a few annually. Thus maintaining their priority over others has little impact on the wait times of others.

5. At a time when there is public concern, Senate hearings and negative op-ed pieces about our nation's transplant system, a reduction in the prioritization of prior living donors would totally eliminate the trust of our prior living donors and thus further erode public trust. Under continuous distribution, my recommendation would be that prior living donors receive a weighting/points sufficient to move them immediately to top of the waitlist.

Region 5 | 03/03/2023

A member commented that in an effort to increase organ availability and encourage donation - the committee should look at living versus deceased donors, and whether consideration has been given for weighting proximity with local OPOs, efficiency, and recovery rates. A member expressed concern about kidneys having lower transplant rates in 35-50 year old candidates, increased graft failure rates in older kidney recipients, and decreased transplant rates for black candidates. Another member commented that more equitable access to renal transplant across regions is a good benefit. Currently, the patients with sensitization and prior transplant appear to have an advantage over other candidates.

Michael Marvin | 03/01/2023

The number 1 priority should be efficiency of the system. All other initiatives, while important, will not have the same impact on the overall number of transplanted organs, and reduction in discards, as efficiency of the system.

Region 10 | 02/28/2023

An attendee recommended that each program should be given an individual report on how their list would look for any proposed Composite Allocation Score before it goes for approval, so if needed, additional modeling could be done. Another attendee added, that although the Committee is getting input from the Pediatrics committee, they would encourage the group to consider the unintended consequences of moving to Continuous Distribution. It appears that the pediatric wait time will decrease based on modeling, but many pediatric centers may be discouraged from accepting organs that travel a greater distance, which may increase the likelihood for delayed graft function. Another attendee noted that the concept of continuous distribution makes sense, but distance should remain a significant factor, to reduce cold time, expedite transport, reduce transportation failures, and reduce organ non-utilization. Allocation scores don't matter if the organ is not transplanted. In regard to Pancreas Continuous Distribution, several attendees noted concern with allocating pancreata more broadly. An attendee noted that when the Pancreas committee was developing Facilitated Pancreas Allocation, data showed that many pancreas programs were unwilling to accept pancreata from long distances and that were recovered from unfamiliar surgeons. The number of pancreas transplants has gone way down across the country. Another attendee added that the concerns with pancreas utilization might be improved by more local priority. This could have a large impact on small programs and likely little impact on large aggressive programs as their access to transplant will likely remain significant as they use organs others may not. Another attended noted that if broader sharing leads to fewer transplants, then it is defeating the purpose. The OPTN needs to ensure that the new allocation system results in more pancreas transplants.

Anonymous | 02/27/2023

Thank you for making available the modeled outcome of scenarios based on various factor weights. Early in the discussions and public feedback about geographically broader allocation several individuals and entities expressed concern that wider sharing would likely penalize regions with high donor recovery rates, and benefit regions with low donor recovery rates. This concern is borne out in scenarios 1, 2 and 4, in which Region 6 sees a 28-36% reduction in transplant rates, and Region 8 sees a 19% reduction in transplant rates. This is unconscionable. If an allocation policy similar to scenarios 1, 2 or 4 were to be proposed, the public and political uproar from those regions would likely be intense, with potentially significant negative impact on UNOS’ reputation and on public attitudes towards transplantation. It was also disturbingly dismissive that the summary of the scenarios says that “the continuous distribution scenarios showed lower transplant rates in some OPTN regions – but was in regions with already high transplant rates and brought these regions closer to transplant rates in many of the other OPTN regions”, as if it was a good thing to bring these regions down to the same poor levels as the other regions. Scenarios 1, 2 and 4 have some good effects. It should be possible to develop a scenario that makes a reasonable compromise between those scenarios and scenario 3, resulting in less negative impact on regions 6 and 8 while retaining much of the better aspects of scenarios 1, 2 and 4. This could be accomplished by adjusting the factor weights, but it also would help if the placement efficiency formula was adjusted. A more reasonable placement efficiency formula would give 1 point for 0-250 NM, while points for 251-750 NM would be calculated as (750-NM)/500, and 751 NM and greater would receive 0 points. This would have the effect of making more candidates “nearby”, thus more likely allowing outcome/biology/urgency/access points to move a candidate nearer the top of the list than does the current scenario 3 with the current placement efficiency formula.

I understand the four scenarios are just examples of possible allocation policies, but if these were the only four possibilities, I would vote for number 3.

Region 3 | 02/24/2023

During the discussion, one attendee commented that the reasons for non-utilization of kidneys are complicated and not easily categorized by a code in the database. They added that we need to understand more about why such a large number of kidneys are not getting transplanted by having better qualitative data to inform all processes. Another attendee commented that one challenge of the system is that it is not easy to understand by patients and professionals.

OPTN Pediatric Transplantation Committee | 02/23/2023

The OPTN Pediatric Transplantation Committee thanks the Kidney and Pancreas Committees for the opportunity to provide feedback. The Committee agrees with high prioritization of pediatric candidates within the continuous distribution framework and recommends that pediatric priority be a top consideration throughout the process. The Committee reviewed the modeling results and noted concern regarding the increased travel distance seen in three of the modeled scenarios. The high pediatric priority is likely to lead to increased offers for pediatric candidates, but it is not clear from the modeling that the majority of these offers will be acceptable for transplantation. The Committee underscores that increased travel distance could lead to decreased graft survival for vulnerable pediatric candidates by increasing cold ischemia time and delayed graft function. Additionally, the Committee is wary of any policy that reduces transplant rate for highly sensitized and racial minority candidates, as shown in some of the modeling results. The impact of allocation changes on vulnerable populations including children, highly sensitized, and minority candidates are crucial to consider in future modeling, both prior to decisions about the final CAS and in post-implementation monitoring. 

Additionally, our Committee recommends a framework where pediatric recipients are prioritized for pediatric donor kidneys, regardless of donor KDPI. In general, the Committee supports prioritization of children and recommends against any policy that drastically increases median distance for pediatric offers.

Region 2 | 02/21/2023

An attendee suggested that having access to test match runs would be a useful tool in helping to determine attribute weights. Being able to see the distribution of potential candidates could help with determining placement efficiency. Another attendee noted that placement efficiency should be of the highest priority. Another attendee stated that in an effort to share organs more broadly and increase equity in allocation, the system has neglected placement efficiency. Donation Service Areas were created as means to allow for quick placement of organs. Without a national transport system the non-utilization rate will only continue to increase. The attendee noted apprehension with moving towards Continuous Distribution without taking the time to address non-utilization and the lack of a national transport system. Lastly, another attendee noted that the OPTN has done a good job with equity and social responsibilities, but there is room for improvement in regard to financial responsibilities. Organ acquisition costs are rising at a rapid rate. Additionally, flying more organs all over the country is not environmentally sound.

Region 4 | 02/21/2023

One attendee commented that the initial models do not seem to show any benefit to moving to continuous distribution for kidneys. Another attendee commented that continuous distribution should only move forward if there is data to support that it is better than the current system. One attendee commented that under the current distribution model, kidney export and import activity has become extremely costly and moving to an even broader model such as continuous distribution seems imprudent until we understand the impact, cost, and outcomes of the current system.

Jef Kinney | 02/14/2023

I am a kidney transplant recipient with an organ from a living donor. As I understand the proposed changes to priority, a prior living donor in need of a new kidney would be evaluated amongst a group of other high priority pending recipients, whereas today I believe they are considered first. I am very opposed to this change for two reasons. First, if my donor were to need a new kidney, it seems unfair to change the rules (move the goalposts) on her when she graciously donated a kidney assuming that she would have priority should she need a new organ. Secondly, the top of the list priority for past donors brings a lot of comfort, and is a major selling point, for living donors. It is a very powerful statement to be able to say "you go to the top of the list". Not being able to make this statement has a high probability of reducing the amount of people who consider living donation.

Most donors do not understand the details of UNOS/OPTN process and criteria and are simply making an altruistic offer to save a life knowing that they are protected should their remining kidney fail. They don't understand the nuances of "high Priority" vs first in line, other than to know first in line is just that.

I am not supportive of this change and believe it will have the unintended consequence of reducing living donor donations. Thank you.

UCSF Immunogenetics and Transplantation Laboratory, Director: Rajalingam Raja | 02/07/2023

I am concerned with the projected decrease in the transplant rates for highly sensitized candidates with a CPRA >80% under all four “kidney weights simulation scenarios” because the maximum CPRA weight is only 15 composite allocation scores (CAS). This means a candidate with 100% CPRA will receive a maximum of 15 points. The "all donor efficiency" and "increased longevity" scenarios further reduced the maximum CPRA-weights to 11.67% and 10%, respectively. 

Despite the 250NM allocation system providing high kidney points for super-sensitized candidates (50 for 99% CPRA, and 202 for 100% CPRA), only <10% of these super-sensitized candidates receive a kidney transplant, and the remaining 90% presumably die waiting for a compatible donor. The new proposal will make this situation worst. Furthermore, the recent addition of HLA-DP antibodies to the unacceptable antigen list to enhance CPRA points will put many candidates with a CPRA >90% at risk of not getting a compatible donor offer.

The weights for proximity efficiency are highly variable across four “kidney weights simulation scenarios,” ranging from 6.7% to 30%. The committee should consider minimizing this variation knowing the kidneys are efficiently shipped to recipient centers across the country using the virtual crossmatch strategy. Reducing proximity efficiency weights (from 30%) and increasing CPRA weight (from 11.67%) should be considered for "all donor efficiency" scenario.

Steven Weitzen | 01/29/2023

I support the concept

Adam Frank | 01/23/2023

I hope to influence the committee working on this, to appropriately prioritize utility in deceased donor kidney transplantation. Pediatric candidates and adult candidates with superior estimated post transplant survival scores (EPTS<=20%) will have the most life years gained with a high quality deceased donor kidney transplant. Personally, I have not seen this emphasized enough with what has been presented with this project/update.