Continuous Distribution of Kidneys & Pancreata Request for Feedback
The analytic hierarchy process (AHP) exercises for kidney and pancreas factors closed on March 23, 2022. For more information about AHP, email email@example.com.
At a glance
In December 2018, the OPTN Board of Directors approved the continuous distribution framework for allocation of all organs. Continuous distribution will rank waiting list candidates based on points related to various factors, such as medical urgency, post-transplant survival, candidate biology, patient access, and placement efficiency. Continuous distribution will remove the hard boundaries built into the current framework to increase equity for patients and transparency in the system.
This request for feedback builds upon the 2021 concept paper, provides an overview of the project’s development process and progress, and offers next steps for continuous distribution of kidneys and pancreata. The paper also requests community feedback that will assist the Kidney and Pancreas Committees’ work.
Watch Rachel Forbes, M.D., chair of the Pancreas Transplantation Committee, provide an overview of the request for feedback on continuous distribution of kidneys and pancreata.
Watch a recording of a Feb. 18 webinar for patients: "Moving toward kidney and pancreas continuous distribution allocation." Panelists include members of the Patient Affairs Committee, the Pancreas Transplantation Committee, and the Kidney Transplantation Committee.
- The community is asked to participate in a prioritization exercise, named Analytical Hierarchy Process (AHP), that will help the committees determine how to rank the various attributes.
- What other factors should be incorporated into the allocation of kidneys and pancreata within a continuous distribution framework?
- Key questions surrounding each attribute including their rating scale shapes, weights, and how they should work in the new system.
- What it's expected to do
- Provide a more equitable approach to matching candidates and donors.
- Remove hard boundaries that prevent candidates from being prioritized higher on the match run
- Establish a system that is flexible enough to work for each organ type
- What it won't do
- This request for feedback is not a proposed policy change, but will help the Kidney and Pancreas Committees develop a future policy proposal
Terms to know
- Attribute: Attributes are criteria we use to classify then sort and prioritize candidates. For example, in kidney allocation, criteria include medical urgency, blood type compatibility, HLA matching, and others.
- Composite Allocation Score: A composite allocation score combines points from multiple attributes together. This request for feedback proposes the use of composite allocation scores in a points-based framework.
- Rating Scale: A rating scale describes how much preference is given to candidates within each attribute.
- Weights: Weights reflect the relative importance or priority of each attribute toward our overall goal of organ allocation. Combined with the ratings scale and each candidate’s information, this results in an overall composite score for prioritizing candidates.
LQ Goldring | 03/24/2022
I like the idea of continuous distribution for kidneys and pancreas. I think going forth with continuous distribution, the committee must take into consideration how candidates in rural areas will be disadvantaged because of barriers to access to a transplant center. In the state of KY, we have two transplant centers and 100 plus counties. Most individuals are forced to travel more than a couple hours to a state transplant center or may have to consider seeking transplant centers across state lines. In addition to taking into account, patients who are already harder matches with higher antibodies/PRA levels and have been waiting 5 plus years for a transplant, would this put these individual candidates as top priority? Would individuals receive more points if they have to travel to a different region to be transplanted due to less transplant matches in their current region? For individuals multi listed for more than one organ, how would points be assigned under continuous distribution? I support a framework of continuous distribution that eliminates disparities to transplantation for vulnerable populations and opens door for equal access to transplantation regardless of race, age, gender, distance, and socioeconomic status.
Anonymous | 03/23/2022
The idea of a continuous distribution of kidneys & Pancreas is great if only for the sake of equity and priority are given to the sickest patient in need of an organ. This is however done with the belief that the organs are national resources that should be shared by all. The concerns are how this process will not disincentivize the local organ donation network who works hard to ensure more people sign up as donors compared to other parts of the country. What will need to be done if more kidneys are going into certain geographical areas of the country compare to others? Likewise, certain factors are not used in the scoring system despite the fact of known effects on kidney transplant outcomes. Such factors include but are not limited to a history of medical non compliance and frailty
Gift of Life Donor Program | 03/23/2022
Thank you for the opportunity to provide feedback on the Continuous Distribution of Kidneys and Pancreata. As we progress towards the continuous distribution model, it is imperative that we first look at and address the significant impact of the recent implementation of the 250 NM broader sharing policy has had on kidney allocation and transplantation. We must consider the many challenges we have faced and incorporate the developed best practices by both transplant centers and OPOs into any subsequent policies and the overall Kidney Allocation System. We must also recognize that many deceased donors are going to have unique challenging clinical factors that impact allocation and oftentimes would only be considered for specific candidates and not those at the top of the list. As we continue to push the boundaries of donation, growth will occur in medically complex donors and any new policies must support ultimate utilization of these scarce gifts. Finally, we must understand that we have already strained the existing courier infrastructure and for kidneys that would require air transportation, we are reliant on an unreliable system, which is severely encumbered by the existing commercial airline cargo rules and timing restrictions. Continuous distribution without careful consideration of efficient practices and proximity between recovery hospital and transplant center will only exacerbate the transportation deficiencies that already persist. We support the use of the simple, piece-wise linear scale. However, placement efficiency should also consider: the numbers of centers an OPO will need to interact with to achieve acceptance, the amount of time to identify final candidates, amount of time after cross clamp to achieve acceptance of kidneys and cost to ship. This is especially important in the more densely populated areas of the country. In the existing 250 NM system, there has been an exponential increase in organ offers, which leads to increased interactions between OPOs and transplant centers. These challenges place a strain on resources and are a burden to OPOs and most transplant centers who do not have the resources and staffing to handle the increased volume and workload. These administrative challenges ultimately lend to declines vs. acceptance. There has been an increase in overall cold ischemic time as well, which can lead to increased DGF. In areas of the country with high donor activity and many transplant centers, centers are frequently considering kidneys from multiple donors simultaneously for the same patient(s) and there are frequent times where kidneys overlap each other in transit for candidates in similar positions on a match run, resulting in increased costs and extended cold ischemic time. The proposed policy must include requirements for transplant centers to fully evaluate primary and back up kidney offers pre-recovery, determine recipient appropriateness, complete a final cross match (all kidney centers should have the capability to perform virtual cross matching to reduce need for sharing donor blood prior to recovery), 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, cold ischemic time increases and OPOs have trouble in completing sequential allocation. Well defined rules and definitions on the requirement of transplant centers to respond to pre-recovery offers, center back up, waivers and transplant center responsibilities during the allocation and acceptance process must be included in any policy related to broader organ sharing. Equitable distribution of kidneys focuses on the optimal donors which every transplant center would consider for all their candidates. Placement efficiency will ensure we promote the best utilization of these scarce gifts. KDPI is the existing grading scale for donors and should be used to develop placement efficiency weighting. Other donor factors that could be considered are DCD status, acute kidney injury, and relevant medical history like hypertension and diabetes history. Under continuous distribution, policy should allow OPOs to grant transplant center back up in the event the intended patient is unable to receive the kidney after its arrival. UNOS should monitor transplant center utilization in back up patients to ensure that an accepted kidney is not used for a backup patient more than 5% of the time. With the current ground courier infrastructure already at its limitation and the commercial airline system being laden with problems and challenges outside of the OPTNs control, there must be a steep drop in weight when you reach the end of the drivable zone (250 NM should be the maximum). A drivable/flying uncertainty zone should not be considered. After the steep drop when you reach the end of the drivable zone, a gradual decrease can resume through the remainder of the country. Weather, traffic, commercial airlines cargo rules and hours of operation are all factors outside of the OPTN’s control. There is very little data available on issues encountered when shipping kidneys via commercial airlines. We cannot overlook these unexpected yet frequent occurrences and challenges when creating this new system. Placement efficiency is even more important with pancreas allocation. We already have enough difficulty allocating pancreas for transplant with so many clinical factors that impact the final disposition. We cannot increase projected cold ischemic time on top of all those other challenges. Many kidney transplant centers do not utilize the screening criteria available; most keep criteria wide open believing a good offer will be missed. This results in match runs that are saturated with patients for whom the transplant center is not truly interested in considering. Prior to any further implementation of policy, technology must be updated that allows OPOs and transplant centers to match donors and recipients more efficiently. The use of the recently released offer filters in UNET should be mandatory for centers to use to reduce unwanted offers and allow OPOs to quickly identify appropriate recipients. Match runs must be dynamic and consider changing donor information throughout the allocation such as warm ischemic time & biopsy results, and update the match run according to transplant center acceptance practices. Efficient allocation must be made a priority and is the key to successfully implementing continuous distribution models across all organ systems. Without tools such as organ filters, OPOs will continue to be in the precarious position of considering expedited, out of sequence allocation, post recovery to ensure utilization of these donated gifts. Gift of Life remains supportive of the continuous distribution model but OPOs desperately need state of the art tools and transplant center accountability in acceptance behavior to make the system more efficient. The process of offering and accepting organs needs desperate overhaul to allow us to be better stewards of these precious gifts. I urge the committee to ensure these rules and tools are in place prior to any policy implementation and not just a future promise.
Patient Affairs Committee | 03/23/2022
The Patient Affairs Committee thanks the OPTN Kidney Transplantation & Pancreas Transplantation Committees for their efforts on the Continuous Distribution of Kidneys & Pancreata request for feedback. The Committee suggests that there should be no cap on points that a transplant candidate is able to receive for waiting time. However, the Committee acknowledges there is concern regarding the potential for viable offers to be turned down if there is the expectation that the waiting time score will continue to increase with no cap. Some of the Committee supported weighing waiting time differently depending on whether a transplant candidate was on or off dialysis. Other Committee members suggested that patients on dialysis should not be penalized, and that the medical urgency attribute should cover the most urgent dialysis patients. The Committee supports the current set of proposed attributes, citing that they are the essential attributes to consider at this point in time. The Committee expresses concern regarding the post-transplant survival attribute as there is a lack of post-transplant survival equivalent for pancreas. Additionally, may the post-transplant survival attribute be too heavily impacted by other factors to be an attribute by itself? The Committee expressed concern regarding the travel efficiency attribute given that the data on organ travel is sparse. The Committee unanimously supports prior living donor priority in the continuous distribution framework.
Anonymous | 03/23/2022
The OPTN Ethics Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for the opportunity to provide comment on their request for feedback. A member noted that ethical foundations for organ allocation do not change and it is essential for clinical practice to reflect ethical principles and not the other way around. A member suggested reevaluating the metrics used to analyze outcomes, noting that one-year survival rate is not indicative of transplant success especially in pediatrics. It was suggested that the Committees considers the inputs, such as any barriers to transplant, and how these can directly or indirectly reflect transplant outcomes. A member suggested considering racial disparities when modeling and used the example of race and living donation. Living donors and their recipients tend to be white, thus impacting the wait time for minority populations and their access to receiving a prior living donor benefit. A member posed the question whether non-organ specific criteria ought to be the same across organ, such as a set pediatric priority for all organs. The Ethics Committee emphasized the need to develop an in-depth evaluation and modification plan. The Kidney and Pancreas Committees ought to consider what manipulations to attribute weighting and composite allocation scores before the changes need to go out for public comment. It is essential to consider how modifications to continuous distribution could differ from other organ allocation systems. The Ethics Committee recommends that the Kidney and Pancreas Committees reevaluate how attributes are characterized between equity and utility. Reevaluating the ethical implications on equity and utility will provide the group with a more robust and ethically sound balancing of attributes in a composite allocation score. Without considering how attributes can affect more than just equity or utility, the composite allocation score will fall short of achieving an ethical balance.
Anonymous | 03/23/2022
The OPO Committee thanks the Kidney and Pancreas Transplantation Committees for their efforts on this request for feedback and their ongoing work on the Continuous Distribution project. One member expressed support for improved and more efficient pancreas allocation. Several members emphasized the importance of placement efficiency, particularly in light of impacts to efficiency in the circles-based distribution. One member recommended the Kidney and Pancreas Committees consider transplant center density as an attribute, which could improve allocation efficiency. Another member noted that continuous distribution will need to emphasize placement, transportation, and allocation efficiency in order to make broader sharing possible and practical. A member commented that high KDPI kidneys and low KDPI kidneys should not be allocated in the same way, and that allocation for high KDPI kidneys should place more emphasis on those centers who will accept those kidneys. One member recommended the Kidney and Pancreas Committees consider how to establish ground rules of engagement between OPOs and transplant programs to highlight transplant programs’ role in getting a kidney utilized, even if the organ is not transplanted at their program. The member also recommended the Kidney and Pancreas Committees consider how to encourage increased cooperation between both transplant programs and OPOs.
Vikram Pattanayak | 03/23/2022
I would like to point out the need for careful modeling and consideration of the candidate biology component of the continuous distribution score. In particular, the use of a linear equation for continuous distribution score (capped at 1) could mean that candidates with a maximum candidate biology score (for example, candidates with a 100% CPRA) would have a very different priority in the continuous distribution system than in the current KAS. In the current system, 100% CPRA candidates essentially have their own separate allocation and jump to the top of the list. In the proposed continuous distribution system, the candidate biology score is capped at the number provided by the weighting coefficient (for example, 0.5 if candidate biology gets 50% weight). Especially if the candidate biology score gets a lower weight than 50%, 100% CPRA candidates could end up consistently lower on match runs than other candidates who have higher combined scores in the medical urgency, post-transplant survival, patient access, and placement efficiency scores. This issue is not necessarily addressed by non-linear weighting of the CPRA component of candidate biology, since the contribution of candidate biology is capped at the value assigned by the linear weight for candidate biology. Therefore, it will be important for the committee to comprehensively study the differences in sequence number for 100% CPRA candidates (defined either by CPRA > 99.5% or some higher number) in the current vs. proposed systems. If 100% CPRA candidates do not get the desired level of access in modeled match runs, one potential solution would be to allow candidate biology to get a component score higher than 1. For instance, if candidate biology ends up with a 50% weight, a maximum candidate biology score greater than 1 would ensure that highly sensitized candidates get similar priority as they do in the current system. In this example, if the candidate biology score were scaled so that the vast majority of patients have a candidate biology score between 0 and 1, but some (i.e. CPRA > 99.8% or CPRA > 99.99%) can go to 2 or higher, the continuous distribution system would be tuned to ensure access for highly sensitized candidates while maintaining appropriate weighting of the other components.
HonorBridge | 03/23/2022
HonorBridge appreciated the opportunity to participate in the online Prioritization Exercise and recognized the value in using that exercise format as a mechanism to collect meaningful input during the comment period. We agree with the medical urgency definition rating scale recommendation for kidney allocation and agree with no justification for prioritizing 0-ABDR kidney mismatches but there may be justification to prioritize DR antigen matching. We recognize the need to model any HLA matching prioritization for unintended disparities, especially for minority populations. It is essential future kidney continuous distribution eliminate current barriers to organ acceptance that was created by KDPI calculation (such as difficulty placing high KDPI kidneys) with a goal to reduce kidney discards and increase utilization of kidneys from medically complex donors. We support maintaining priority for highly sensitized candidates in new system, agree with priority for prior living donors in pancreas and kidney-pancreas continuous distribution, and agree with the rating scale recommendation of pediatric candidates. We support Piece-Wise linear approach, emphasize assigning more points to efficiency depending on organ quality and donor type (DCD). Organs from medically complex donors should be kept closer to donor hospital to reduce impact of travel time on outcomes. Since kidney match runs often include thousands of potential recipients, robust innovations such as filters and predictive analytics are crucial to match more organs with transplant centers that will accept them timely and reduce current discard rates. Another measure of efficient management of organ placement that should be taken into account in points-based framework is center use of virtual crossmatching. New continuous distribution framework should include flexibility for OPOs to use dual allocation of marginal quality kidneys to increase utilization and decrease discards.
Anonymous | 03/23/2022
The Pediatric Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for the opportunity to review their request for feedback. The Committee provides the following feedback: The Committee mentioned that having two separate AHP exercises didn’t allow for congruency when asking about pediatric priority across kidney, pancreas, and kidney-pancreas allocation. The Committee also mentioned that pediatric candidates don’t receive an EPTS score and KDPI scores aren’t really accurate for pediatric donors, so this should be an area of focus for the Kidney and Pancreas Continuous Distribution Workgroup. The Committee expressed concern about pediatric priority only being included in the pediatric priority attribute, especially since EPTS does not apply to pediatrics. The Committee cautioned against assigning a lot of weight to attribute that don’t apply to pediatrics or suggested figuring out a way to equalize all attributes so that they account for pediatrics. When discussing how to balance kidney-pancreas and pediatrics, it was mentioned that there is a clear equity issue with the current system. KP patients wait substantially shorter time than adult kidney-alone patients (and our data suggest that they wait slightly less than pediatric candidates when only active time is considered) despite waitlist mortality for KP candidates being similar to that of adult kidney-alone candidates (exact numbers are a bit tricky to find). Based on a number of ethical principles, including fair innings and MinMax, children are considered a vulnerable population and should be given a certain level of priority in allocation; however, currently adult diabetics are given priority over children. Approximately 90% of adult KP recipients receive a kidney with a KDPI 35%. There are also utility concerns. Quality pancreata are hard to find. Programs typically do not have the resources to send a local procurement team out for the organ, but many procurement teams outside KP centers do not have the expertise to remove these organs. It is common for pancreas transplants to be cancelled during or after allocation due to the organ not being suitable for transplant. These late cancellations can lead to challenges in re-allocating the kidney. The kidney may have accumulated too much CIT to be shipped to a pediatric candidate. Because of these issues, KP transplant programs and OPOs worry that not giving priority to KP will result in a substantial decline in pancreas numbers or impact OPO utilization metrics. A few ideas that nibble at the edges of the problem: -Make the geographic acuity circle for pancreas smaller. As pancreata often cannot be procured by distant teams and do not always travel well, this would decrease incidences where the K-P is allocated and then ultimately canceled due to unsuitable pancreas. These late K-P cancellations can result in a need to re-allocate a kidney that may no longer be suitable for a pediatric candidate. -Currently, an OPO is required to offer the kidney with the pancreas for the first 5 allocation categories, which includes everyone within 250NM, and then has the option of offering the kidney with the pancreas more broadly OR offering the kidney alone. Two potential changes would include (1) eliminating the option and requiring the kidney to be offered alone, and (2) creating medical criteria, such as a status 1A and status 2, where the kidney would first be offered with the pancreas to status 1A patients first, with the status 1B patients having similar priority to the safety net patients. Pancreas physicians would have to help decide what would make a patient 1, but it likely could include some combination of waiting time on dialysis, EPTS, cPRA and pancreas-based factors. -Give some priority in pancreas allocation to pancreas-alone and pancreas-after-kidney candidates, so that there is not an unintended consequence of pushing patients/physicians towards SPK. Alternatively, the number of PAK vs SPK transplants could be a metric used to monitor centers and ensure that no one is gaming the system, or PAK candidates could be given priority for the end of living donor chains. -Geographic variation in KP transplant numbers can result in geographic disparities of the impact of KP on pediatric transplant programs, with pediatric programs next to a busy KP program seeing more kidneys diverted towards KP adults and programs without neighboring KP programs not having the same issue. It’s not clear whether this results in longer total wait times for children near KP centers. This issue needs more study, and could lead to suggestions such as requiring re-allocation of a released kidney to be first offered to a local pediatric candidate.
Caitlin Peterson | 03/23/2022
Pediatric kidney transplant patients are a vulnerable group and could be seriously disadvantaged with this change in organ allocation. The number of pediatric patients on the waitlist is small and they often do not have the opportunity to have their voices heard, even with public comment. UNOS should continue to advocate for this population and follow the ethics committee recommendations that pediatric patients receive priority on the waitlist. I strongly support that pediatric patients receive highest priority on the continuous distribution spectrum of kidneys and pancreas transplants. Additional modeling is needed to see how this will change the ability for children to receive quality kidney transplants in a timely manner.
Anonymous | 03/23/2022
Committee members requested that the proposal include a steep, non-linear rating for CPRA as a candidate biology attribute, and that the Kidney and Pancreas Committees specifically look at CPRA >99% candidates in modeling as there are significant differences in access to transplant for those candidates by fractions of a CPRA point. Members want to ensure that highly sensitized candidates maintain appropriate allocation priority, as candidates with a CPRA >98% are highly prioritized in the current kidney allocation system, with CPRA 100% candidates receiving 202.10 KAS points and having required national allocation. These candidates are biologically incompatible with most donor organs, and they should have the highest priority for the few offers they are able to accept. Committee members recommended that the Kidney and Pancreas Committees evaluate the impact of proposed HLA matching on minority groups based on the frequency of HLA types in the donor population prior to incorporation of HLA matching in the final proposal for kidney allocation.
Anonymous | 03/23/2022
The Transplant Administrators Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for the opportunity to provide comments on their request for feedback. The Committee supports the work done so far, and offers the following two recommendations. (1) That consideration should be given to keep the flat points gained for being on dialysis, as this will encourage candidates to accrue wait time while on dialysis. More generally, a number of the changes to kidney and pancreas allocation in the past few years have had positive impacts, and therefore (2) The continuous distribution framework should use these results to inform the new allocation practices.
Anonymous | 03/23/2022
Comments: Attendees discussed concerns regarding distance models based on KDPI stratification. An attendee suggested the KPD exercise should be more complicated, noting the feedback received would be better if the questions were more nuanced and less obvious. A commenter recommended improving matching of organs for pediatric recipients in continuous distribution. An attendee stated that a new allocation plan has to identify realistic transplant matches to avoid discards and logistical complications. Multiple attendees noted there should be consideration of matching pediatric donors and recipients for appropriate allocation. A commenter requested the Committees consider using CMV seromatching criteria for kidney allocation. A commenter stated it would be difficult to develop continuous distribution for kidneys because dialysis removes the urgency in prioritization, which is based on factors that involve long-term studies; optimal continuous distribution will take years of discussion and by then, the parameters will change.
Anonymous | 03/23/2022
the recent change of continuous distribution and 250 nm allocation circles has benefited large centers in large cities who were already performing a large amount of transplants. now the larger centers are taking even more from smaller centers in smaller cities. in smaller centers, more patients are dying on the waitlist and fewer patients are being transplanted. the transplants that are being done are with much longer cold time due to the greater geographic distribution. smaller centers have less resources for pumps, less resources to manage dgf, less resources to pay for increased sac fees and travel logistics. the attempt to address geographic equity, has resulted in resource inequity and population inequity. changing the geographic distribution from 250 nm to 150 nm as with livers may help this new inequity. that would be my idea to help solve this inequity. please consider any other ideas that could help solve this newly created inequity.
Humana | 03/23/2022
Humana supports efforts to increase equity in transplantation and changes such as the continuous distribution framework that intend to increase access to kidney and pancreas transplants.
Anonymous | 03/23/2022
I support the underlaying idea of a continuous distribution plan however, the plan must take into account the travel distance (time and mileage) for the placement of the kidney and pancreas organs. The current system UNOS is using is greatly impacting the more rural transplant centers in this country. Our deceased donor rate of transplants has been cut in half. Fairness needs to apply to everyone, not just those living in large urban cities. The reality is that if the smaller, rural transplant centers can no longer function, there will be large sections of the rural population that will never have access to transplantation. The folks that in these areas will not travel to the large cities to get transplanted because they do not have the means for the long period of follow-up care.
American Society of Transplantation | 03/22/2022
The American Society of Transplantation is generally supportive of continuous distribution for kidney and pancreas; however, there are several concerns: The American Society of Transplantation appreciates the OPTN’s efforts to reassess kidney and pancreas allocation. This will be a substantial change from the current system, and would benefit from more extensive dialogue and analysis, potentially convening a meeting of interested stakeholders. The goals of continuous distribution need to be better defined. Rather than just looking at broader sharing, the OPTN should also be looking at maximizing the benefits of grafts and prioritizing those that will benefit the most. Concerns about increased delayed graft function following recent allocation changes have been raised. Delayed graft function and long-term outcomes and plans to monitor these trends must be considered in any future proposal. The AST’s Communities of Practice also provided the following comments: Including some of the proposed components into the new framework has the potential to exacerbate existing known inequities in kidney allocation. 1) Including travel efficiency into the framework has the potential to partially reverse recent changes in allocation to address geographic inequities. 2) We cannot ignore the hard borders that still exist between DSAs and create financial disparities that translate into geographic disparities.?? Analyses leading up to the proposal need more focus on pediatric patients to ensure they will not be unfairly impacted by the changes. It is not clear when the ceiling waiting time is reached. We agree with points for DR matching with continual monitoring of its effects on minority communities. We also agree with change in the weightage based on data obtained. (Low weightage) HLA matching for pancreata should follow the pattern of kidney allocation. EPTS – We support awarding points for top 20% candidates for top 20 KDPI kidneys. We want to state that EPTS and KDPI are independent variables and there is no cross communication. We need to have better models where these two variables have better predictability for organ and recipient survival. o After EPTS 20% - Low weightage. o Weightage should increase after KDPI 85% CPRA – We agree with the nonlinear rating scale. High weightage based on cPRA >99 to get these patients transplanted Blood Type – B and O blood type should be prioritized. Non-A1/non-A1B kidneys can be prioritized to blood groups B and O. We also agree with the rating scale in Figure 11(incorporating blood type and CPRA together and weightage based on combined score) We agree with the binary scale for prior living donors. EPTS, CPRA, and blood type should be considered for organ allocation. For pediatric candidates, we agree with the high weightage rating scale recommendations. We support high weightage for waiting time and recommend points for preemptive listing (to encourage preemptive transplants). We agree with the rating scale and maintaining current KDPI thresholds. We agree with the workgroup’s approach to placement efficiency. High KDPI, DCD organs should be weighted higher to accelerate placement of such organs. Inner plateau should be 50 NM. Dual transplants should be weighted in the allocation system. A clear pathway for dual transplants will help reduce the waste of organs. We agree with the weighted scale for en bloc kidneys. In summary, this is an exceedingly complex framework being proposed, which will make the evaluation of the impact of each component on outcomes on the efficiency of kidney allocation and the associated inequities in this system difficult to ascertain. The OPTN should carefully consider and detail in any future proposal how it plans to evaluate components the continuous distribution framework, in addition to the overall impact.
Association of Organ Procurement Organizations | 03/22/2022
Please see attached document.
Anonymous | 03/22/2022
The Ad Hoc Multi-Organ Transplantation Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for the opportunity to provide comment on their request for feedback. Members acknowledged the challenge of assigning value weights to attributes and praised their use of the Analytic Hierarchy Process to gain community feedback. A member suggested referring to the AHP exercise as a ‘values survey’ in order to be more patient friendly. A member suggested using a higher value weight for the prior living donor attribute than continuous distribution of lungs. Members also discussed the possibility of using a tiered approach for the kidney after liver, kidney after heart, and kidney after lung safety net rating scale that takes into account medical urgency, but felt that the binary rating scale for the safety net makes sense. Members said that ideally the integration of the safety net in continuous distribution should result in safety net candidates receiving kidney transplants in a similar timeframe as compared to current practice. It was also suggested to utilize EPTS matching for safety net kidneys to reduce the number of Sequence B kidneys used for safety net patients. A member also suggested prioritizing pediatric patients over safety net patients.
Anonymous | 03/22/2022
The members of the region had several comments and feedback for the committees as they continue with the continuous distribution project. In addition to the attributes already identified by the committees, one member suggested that length of time on dialysis should also be an attribute. A patient who has been on dialysis for a long time should receive high priority in the new system. Another member commented that there needs to be a sliding scale for pediatric patients, instead of the binary yes/no. Young children can have detrimental neurological and physical developmental impacts due to being on dialysis. The younger a patient, the more priority they should receive and less priority as patients progress to adulthood. Another member suggested considering metrics to address imbalances in poor, rural candidates who may be distant from center. Also, to consider inclusion of race and socioeconomic disadvantage. Lastly, another member implored the committees to consider other aspects to placement efficiency besides just distance. Allocation is very different in various places around the country due to concentration of transplant programs in a given area. The high concentration of transplant programs in the Northeast and Mid-Atlantic, which is not the same in the western part of the country, has greatly slowed down the allocation process which can have negative effects on donor families and their willingness to consent to donation.
George Bayliss | 03/21/2022
The change to continuous distribution from geographic regions and 250 NM circles is going to represent and enormous disruption in the way kidneys and pancreata are distributed. It might make sense to trial the changes on a smaller level like the UNOS regions to get a sense of what the unintended consequences of the change will be before CD goes live across the whole country. Could one try this in larger regional groups (regions 1,2,3, 9, 11; regions 4, 8, 7, 10; regions 5 and 6) to get a better feel for how this system will work? It would also make sense to look at the assumptions that went into the change to create 250 NM circles to see how correct they were and whether this change has accomplished what it set out to do. Finally, there has to be a stated mechanism for reweighting the variables in the composite score to reflect the realities of continuous distribution and to include patient voices as we gain experience with it. Even for transplant professionals the assumptions that have gone into creating the variables and the process for weighting them are difficult to understand. We will have to be able to explain to our patients why this a better system than the regional one, heavily dependent on waiting time. The point of the change is to make a fairer distribution system that in being free of geography and hard borders, balances equity, justice and efficiency so that more kidneys are distributed to people who need them and so that fewer organs go to waste..
American Society of Transplant Surgeons | 03/21/2022
Please see the attached document.
Anonymous | 03/21/2022
A member commented that it would be important for the Committees to consider community characteristics when developing Continuous Distribution to help reduce disparities in transplant. Another attendee expressed support for developing a framework that will be uniform across all organs.
NATCO | 03/21/2022
Please see attached document.
American Society of Pediatric Nephrology | 03/21/2022
Please see attached document.
Anonymous | 03/21/2022
A member noted their support of the direction the committees are taking as Continuous Distribution will lead to a more fair distribution of organs. Several members voiced their support for the use of the prioritization exercises and one member noted that it was straightforward for the non-clinician. It was also noted that as the committees continue with their work, living donors should be given the highest priority in the new system. There was also support for giving more priority to pediatric patients. Another member stated that the committees need to be careful with assigning high priority for patients that are the hardest to match. Most of the patients who have the highest degree of sensitization have had prior kidney transplants, and it would limit access for first time candidates. Furthermore, it remains unclear how this system is an improvement from the current system, especially since both allocation systems include ratings and attributes that are subject or "value" based. It would be helpful to show some specific candidate examples and how this would be beneficial. Another member noted that as the committees progress they need to find out how to calculate medical urgency for pancreas and KP patients. Lastly, another member encouraged the standardized use of virtual cross matching to expedite organ placement and a standard policy for local back up for import kidneys with over 24 hours of cold ischemia time.
American Society for Histocompatibility and Immunogenetics | 03/19/2022
The American Society for Histocompatibility (ASHI) and it's National Clinical Affairs Committee (NCAC) appreciate the opportunity to provide feedback around the criteria or attributes that will be used for continuous distribution. ASHI supports applying the most weight for medical urgency, candidate biology, and factors associated with post-transplant graft longevity, including HLA matching and CPRA.
Paul Morrissey | 03/18/2022
I have concerns about Continuous Distribution (CD). Firstly, this schema has not been shown to be better than the existing system. UNOS officials have repeatedly started the CD will be different and nimbler, but data that it will be better (more transplants, fewer organ discards, less DGF, better post-transplant organ survival) are lacking. To that end, the cartoons on the UNOS website supporting Continuous Distribution evoke a corporate PR campaign and not a scientific (data driven) presentation based on statistics and modelling. Organ distribution outside of traditional OPOs and within 250 nM has added tremendous complexity to the system. Transplant centers have restructured their programs to field the far greater number of organs offers. There have been winners (more kidneys, better quality) and losers (fewer low KDPI local kidneys, more marginal allograft offers) in the new system. The group at MUSC demonstrated these phenomena in a recent article in JACS (March 2022: 565-570). Burdens on OPO staff and transplant professionals have been immense: up much of the night, every night, fielding organ offers with few actual organ placements within their center. The growth of Buckeye and other “call” services new to the transplant system supports the burden of this change. If CD adds to non-local organ placements, then it furthers concerns about transportation planning and costs, added CIT, increased DGF and need for dialysis, increased hospital length of stay, and increased morbidity for recipients. The 250 nM system resulted in markedly different effects on organ offers based on quirks of geography. In our region, enters in NH and ME had far fewer organ offers than centers in CT due to the latter’s proximity for organ donors from NY, NJ and PA. Deceased organ donation dropped dramatically in those centers located in northern New England. Would CD exacerbate that change, have no effect or improve it?
Anonymous | 03/18/2022
A member emphasized the importance of taking the prioritization exercise and engaging on this project now, before the proposal is finalized. One attendee suggested it would be helpful to have more specific aims for what the project is trying to achieve. Another member suggested that broader sharing has cause efficiency to suffer, and that they now hear about otherwise useable organs at a time when they can no longer be safely used. A member expressed strong support for the project and encouraged quick work in moving it forward, per the recommendations of the National Academy of Science.
SUNY Upstate Medical University Hospital | 03/18/2022
Our team believes that hospital proximity (“efficiency”) should have negligible weight. It may simply give patients who live in less populated areas with wider geographical distributions a disadvantage. Given use of machine pumping, this is not a significant issue for kidney, although an argument could be made for more weight for pancreas transplant. The scenarios compare patients with 10-15 years of waiting time to transplant to those with other characteristics. Although for the individual patient, the urgency is greater, this group of patients is expected to live for shorter time compared to those with much shorter accumulated time (EPTS score factors in time on dialysis as an important element). Therefore, we don’t believe that this long-term group should have significant weighting based on the principle of making the best use of a scarce resource. That was the idea behind matching low KDPI kidneys to low EPTS recipients. If there were not such a severe organ shortage, then this could be weighted more in favor of the longer waiting patients We are opposed to giving high weight to combined liver-kidney transplant. We are aware of the improved early survival in liver transplant recipients without renal failure, but do not think that the issue of recovery from hepatorenal syndrome has yet been completely characterized. We believe that this significantly disadvantages the much larger group of patients waiting for kidney transplant. We believe that children should have priority above others given the unique complications that they face from kidney disease.
Adam Frank | 03/18/2022
I would like to put forward a concept for consideration as Continuous Distribution is being developed. I have concerns that young adults (18-25year old, or potentially, 18-29yo) are not being given enough priority in the allocation systems currently being developed. There are obligate protections for pediatric recipients which generally has strong societal support. I suspect that societal support is also present for the young adult age group. There are certainly reasons of utility and equity that would support prioritizing transplants into this age bracket. It should be recognized that the potential societal benefits, when this age group is transplanted, is tremendous. This age group has an increased likelihood of returning to school or the work force and will have very high number of life years gained. It seems reasonable that a sliding scale for youthful adults ought to be developed. The hard boundary of
Anonymous | 03/17/2022
I agree with a prior post regarding pediatric candidates getting disadvantaged by this proposal. We saw that happen before with prior proposals. To quote: 1. Pediatric families often have a further distant from transplant centers as pediatric transplant centers are less common and often have a large catchment area than adult centers. Consideration of distance from transplant center could unequally impact pediatric patients in a negative way. 2. Consideration of the neurocognitive outcomes of children should remain a priority and consideration as this system is considered. Kidney transplant greatly improves the long term neurocognitive outcome of children with time on dialysis negatively impacting neurocognitive outcomes. 3. Lost time with school, limitations of social interactions that shape childhood development, growth retardation, and poor academic achievement that can be experienced in children as dialysis patients all impact the life potential of the patient as an adult. These factors impact mental health, employment, and financial independence of children as they transition to adulthood.
Anonymous | 03/17/2022
Several members supported the development of a better prioritization framework for kidney patients. One member went on to recommend the committee look into adding more granularity to EPTS to make it more robust, adding that combining it with KDPI could create a stronger predictive calculation for continuous distribution. Another member commented that the safety net for kidney after liver is too heavily weighted and negates EPTS/KDPI longevity matching. One member commented that from a pediatric perspective, there should be consideration about how much weight is given to sensitized and multi organ transplants to make sure that pediatric patients are not disadvantaged. They added that when weighing attributes, the age and longevity of candidates needs to be a big part of the discussion. One member commented that more data is needed around the impact of continuous distribution on low SES candidates and how to efficiently place “hard to place” kidneys, particularly in more rural centers. Another member commented that it is very important to encourage transplant patients to participate in the AHP exercise to ensure the general public perspective is considered when developing the score. They went on to recommend that transplant professionals encourage remote transplant patients participate in the AHP exercise.
Anonymous | 03/16/2022
The Transplant Coordinators Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for the opportunity to provide comment on their request for feedback. The Committee poses a number of question which they feel must be considered: Should non-dialysis waiting time be weighted differently than waiting time spent on dialysis? Additionally, should inactive waiting time be weighted differently than active waiting time? Were there plans to weight the 0-ABDR mismatch candidates differently than the highly sensitized candidates on a match run? The Committee also provides the comment that the composite allocation score should continue to be easily accessible by programs, similar to how easily accessible current kidney allocation scores are.
Loren Gragert | 03/09/2022
I strongly support the concept of continuous distribution of kidneys, especially the idea of removal of hard boundaries in policy that have unnecessarily limited access to transplant. As my role in this field mainly involves assessing histocompatibility, for my comments I'm mainly going to focus on the candidate biology score, but I also have some concerns about the overall weighting model for the continuous distribution framework. The disparity among candidate ABO blood groups was not addressed by KAS in 2014 and has persisted. Some details about how HLA antibody sensitization and ABO blood group could be merged into the candidate biology score have been presented to some OPTN Commitees by James Alcorn from UNOS. I anticipate that implementation of the unified candidate biology score will have a tremendous impact on ABO disparity, when coupled with removal of biology restrictions that limit transplants that are ABO-compatible but not ABO-identical. B and O blood group candidates currently have lower transplant rates. I felt it was a missed opportunity that this important concept was not detailed in this public comment document on continuous distribution. The design of the candidate biology score will end up being a key component of continuous distribution that deserves much greater attention, because I expect this is one of the missing pieces that will improve equity in access. My main area of concern with continuous distribution is with the overall scheme of computing a composite allocation score as a simple linear weighted average of the 5 individual factors. After doing the AHP prioritization exercise myself, I’m having a hard time understanding how the maximum contribution for candidate biology to the composite allocation score would have anywhere near the same relative valuation as under the current KAS. The 202.10 allocation points currently given to candidates who are CPRA point group 100 is certainly very powerful for determining overall allocation priority today. My assessment of what is proposed so far is that, on average, CPRA=100 candidates would not be prioritized for offers to the same degree under continuous distribution, even if candidate biology were to comprise 50% of the overall composite score (and it is hard to imagine the consensus from the transplant community with the AHP process would result in it being anywhere near 50%). For the most highly sensitized, it is simply a fact that candidate biology completely dominates their access to transplant relative to all other factors, regardless how one might value candidate biology as a factor. I would propose that the nonlinear relationship between CPRA vs candidate biology score might need to extend all the way up to the overall composite allocation score to ensure that equity is maintained across candidate CPRA values. Having the linear combination with the AHP-determined weights as a 2nd layer for determining the overall composite allocation score will squash down the nonlinearity that we currently have with CPRA and allocation points in KAS. One way to address this disparity has been to unlock access to regional and national sharing of organs for highly sensitized candidates. Thus candidate biology and placement efficiency will have strong interactions that must be considered in designing the continuous distribution model, yet these two factors are independently weighted in the AHP model. Additional levers may be needed to ensure equity is maintained for highly sensitized candidates. The lung continuous distribution modeling performed by SRTR did not include transplant rate or other outcomes analysis by candidate CPRA, but I anticipate such results will have to be part of the kidney models. I’m trying to anticipate the results of the first round of kidney allocation models before they come out and propose we might need to explore some alternative formulas for composite scoring in the SRTR models that are ordered. I am a strong supporter of continuous distribution, but at the same time I want to highlight some of the potential complexities that might not have surfaced thus far. I'm looking forward to seeing this important work progress towards implementation.
Anonymous | 03/09/2022
From my perspective taking call, I have seen a major decline in quality offers. Some of our patients, who once were getting regular offers are no longer seeing offers since the change. CIT has greatly increased, not to mention the cumulative cost of transportation as well as longer hospital stays and DGF and wasted organs because of this. It makes no sense what you did.
Fouad Kandeel, MD, PhD | 03/07/2022
I am writing from the perspective of a transplant hospital that offers pancreatic islet transplant only and also accepts human pancreases for basic science research. I appreciate the Committees’ efforts to recast the allocation parameters to achieve equity in organ allocation and address the needs of the patient while reducing organ wasting due to lengthy and convoluted allocation process. Historically, pancreas allocation criteria have favored whole pancreas transplant over experiment pancreatic islet cell transplantation, with younger and lower body mass donors first offered for whole pancreas transplant. However, with national rates of whole pancreas transplant and pancreas-kidney transplant declining in recent years and a regrettable number of donor pancreases not being placed, further efforts to simplify the allocation process, make it more equitable and increase pancreas utilization are needed. I have tested and submitted my feedback via the AHP tool. I would also like to refer the OPTN to an editorial paper my colleagues and I published in Cell Transplant in 2021, entitled “Towards a Rational Balanced Pancreatic and Islet Allocation Schema” (accessible for free on Pubmed: https://pubmed.ncbi.nlm.nih.gov/34757859/). In it we offer some further suggestions for improving allocation for pancreas and islet transplantation with a weighted point structure, including factors related to recipient health condition and the donor specifics. Factors related to the transplant candidate include: diabetes severity (defined by presence and severity of hypoglycemia, glucose variability), associated kidney transplant needs, surgical risk, daily insulin requirements, and cPRA. Donor factors include: proximity, age and BMI. The rationale was to provide objection scoring system to allocate by candidate need and risk factors first, then by proximity, and then by donor-related factors that could also influence outcome. I believe the development of an allocation system that includes such factors is immensely important for optimal utilization of this highly precious and life-saving gifts.
Anonymous | 03/04/2022
The OPTN Minority Affairs Committee appreciates the opportunity to comment on Continuous Distribution of Kidneys & Pancreata Request for Feedback. The Minority Affairs Committee supports the sponsoring Committees’ intention to provide the pediatric population with increased access by placing them in the patient access identified attribute.
Anonymous | 03/02/2022
• Comments: An attendee noted variability in pathology readings need to be considered. Another attendee commented that sending kidneys 100 to 500 miles for minimal difference in wait time makes little sense, is costly, and increases cold ischemic time on kidneys which is not advantageous to patients.
Anonymous | 03/02/2022
The OPTN Living Donor Committee thanks the OPTN Kidney and Pancreas Transplantation Committees for their efforts in developing this project and the opportunity to comment. The Committee applauds the inclusion of prior living donor priority as an attribute of kidney and pancreas allocation and strongly supports providing PLD priority for all living donors. The Living Donor Committee has discussed the prior living donor priority question at length and concurs with the Kidney and Pancreas Committees’ conclusions that prioritizing prior living donors is both medically and ethically justified. Living donors make a selfless decision to put their health at risk to improve the life of another human being. Though living donation is relatively safe, there is still intrinsic risk associated with organ donation as outlined in OPTN living donor policy, and a lack of systematic collection of data about long-term outcomes. Additionally, as the practice of living donation grows, the Committee recognizes the potential for still unknown risks to be associated with donation. Living donors contribute to the transplant system by donating to one wait listed patient and in doing so, enable transplantation of another waitlisted patient when a deceased organ next becomes available. The Committee supports the societal value of reciprocity to make a donor whole and sending a message to the public that the system values and will stand behind living donors. Additionally, PLD priority offers support and assurance to potential donors and the donors' families that the system will take care of them should they ever need a transplant. The Committee strongly supports maintaining high priority for prior living donors and believes this attribute should be given the appropriate weight to maintain their current level of priority in the new continuous distribution system.
Anonymous | 03/01/2022
As the committee considers the merits of this proposal, I would like to bring a few points of consideration related to the pediatric patient population: 1. Pediatric families often have a further distant from transplant centers as pediatric transplant centers are less common and often have a large catchment area than adult centers. Consideration of distance from transplant center could unequally impact pediatric patients in a negative way. 2. Consideration of the neurocognitive outcomes of children should remain a priority and consideration as this system is considered. Kidney transplant greatly improves the long term neurocognitive outcome of children with time on dialysis negatively impacting neurocognitive outcomes. 3. Lost time with school, limitations of social interactions that shape childhood development, growth retardation, and poor academic achievement that can be experienced in children as dialysis patients all impact the life potential of the patient as an adult. These factors impact mental health, employment, and financial independence of children as they transition to adulthood.
Anonymous | 02/24/2022
I agree with others that the Spring 2022 Prioritization Exercise was very useful and easy to use - even for non-clinicians! I also agree with another comment that suggested distance does not receive very many points compared to lungs since kidneys can travel further than lungs. Lower points for distance would also lessen the geographic inequities in kidney allocation.
CAPM | 02/24/2022
The 11 UNOS regions differ substantially in size and proximity of transplant programs and OPOs. Region V is very large physically with great distances between centers. The experience with proximity circles has shown that preservation times have not been extended to a great degree by broader distribution. Applying the same distance parameters to all regions will have unequal effects on organ sharing and availability. In a region like ours; distance should be downgraded in its importance on allocation. There are extensive commercial airline connections between all of the major cities in our region such that efficient transport of kidneys is quite feasible. Downgrading the importance of distance between donor hospitals and transplant centers will lessen geographic inequities in kidney allocation.
Anonymous | 02/23/2022
1. Medical urgency. I believe this should be heavily weighted given the life or death situation for these patients. 2. Post transplant survival. This should carry very little or no weight at all, since so many factors go into post transplant survival that are hard to predict or classify. Maybe a few points for 2 DR match. This may be different for peds? 3. Keep EPTS the same. Top 20% KDPI preferentially go to top 20% EPTS. 4. No change in prioritizing 100% and 99% cPRA. 5. Would continue weighing waiting time heavily 6. Would add alot of weight to placement efficiency. The new allocation based on concentric circles has significantly increased travel and cold time. DGF rates across the county have doubled adding significant costs and burdens to transplant programs and hospitals. This will only get worse unless emphasis or value is added to proximity. Perhaps weight can be inversely proportional to KDPI? The higher the KDPI, the more weight is assessed to proximity.
Anonymous | 02/23/2022
Several members supported the shift to continuous distribution for kidney and pancreata, and think that involvement in the AHP exercise is important and should include representation from other organ expertise as well. A member suggested for the committees to include allocation of kidneys with extra-renal (multi-visceral) candidates in the attributes discussion. A member commented that having the right input and methodology to determine parameters and weights for the medical and non-medical criteria will be a challenge.
Lorri Curto | 02/22/2022
I have a question about the Continuous Distribution proposal that I haven't seen mentioned. Is consideration of recipient support system and ability to maintain necessary lifestyle changes resulting from transplantation no longer a factor using Continuous Distribution? I see no mention of patient compliance or support systems in the literature or videos for this policy.
Anonymous | 02/18/2022
One attendee recommended that the OPTN should use a different term for AHP that is more understandable to the community. Another attendee encouraged the committee to carefully consider the different value weights from patients, transplant centers and OPOs. One attendee commented that continuous distribution should be slowed down so that data can be reviewed from the lung implementation before starting work on other organs. They went on to comment that the goal needs to be more defined than broader sharing and should include goals to maximize the benefits of grafts. One attendee commented that despite reviewing models and engaging in the survey, they still do not understand CD or why there is a push to move the system to kidney and pancreas distribution at this time. Another attendee commented that is it important to align continuous distribution with other organs.
Anonymous | 02/16/2022
A member suggested that using nautical miles for the distance component could disadvantage geographically isolated areas and a larger scale, such as a center’s proximity to areas of organ donors, should be considered. Regarding the feedback request of how to operationalize dual kidneys and en bloc, members suggested an opt-in system so that these organs are quickly placed in the appropriate centers. A kidney with a KDPI high enough that over 50% are discarded should rapidly be allocated to dual transplantation so that they can be transplanted in a reasonable time frame. As such the potentially discarded kidneys should have higher weight of placement efficiency. o A member expressed a concern that pediatric patients will be disadvantaged by this project and encouraged the committee to thoroughly model this out within the continuous distribution framework. A member indicated that although kidneys can tolerate longer ischemia time, they have heard a desire to keep donated organs local so donors benefit their own community.
Anonymous | 02/16/2022
Members in the region had a few suggestions for the committees to consider as they continue moving towards continuous distribution. One member noted that living donations needs to be protected, and by extension, ensure prioritization for living donors. Prioritization of living donors improves the entire system by potentially increasing the number of kidneys available. Another member stated that it will be important to give appropriate weight to pediatric candidates so that there is no significant decrease in wait time for this population that benefits in so many ways from transplant. It was also noted that the pancreas criteria being considered are either extremely rare, such as pediatric or living donor, or related to proximity versus wait time. The Pancreas Committee previously looked at the number of programs that import organs and it was very small. The member strongly encourages the committee to consider making proximity, rather than broad distribution, one of the primary goals of the new allocation. Lastly, it was suggested that the kidney committee consider a continuous scale for EPTS instead of the current categorical EPTS.
LifeGift | 02/10/2022
LifeGift strongly supports continuous distribution while acknowledging the associated challenges of transportation and cold ischemia time. We suggest that kidney transplant programs strongly consider routine use of the virtual crossmatching on all kidney offers where there is interest to help accelerate placement and reduce chances of unexpected positive crossmatch. This also allows for OPOs to conserve limited biological materials to send where there is an existent neg virtual determination (actually not a crossmatch anymore).
Anonymous | 02/02/2022
Applaud the committee on moving forward with continuous distribution. To achieve more equity, would strongly recommend giving less weight to distance than for example lung algorithm as kidneys can travel further. otherwise fully support this effort moving forward to policy.
Lana Schmidt | 01/30/2022
Kidney dialysis patients should not be uselessly suffering or prematurely dying because the proper donor system is not in place for them to get off dialysis and live a normal life with a transplant. This is a tragic medical crisis. We need more organs and we should be implementing every possible means to increase the organ shortage: Approving clinical trials for more desensitization. Approving more drugs for desensitization use such as soliris. Implementing the presumed consent option. Tax deduction or compensation in some way for a living donor making such a huge sacrifice. Etc... In the USA, approximately one-third of patients who are waiting for a kidney are considered sensitized and will have a difficult time of receiving a kidney match due to their high antibody level. Sadly, many of them will die before a transplant match becomes available. Eculizumab (Soliris), and other treatments like this, could potentially help many kidney patients with high antibodies receive a transplant and have a new lease on life, but larger research studies are needed to prove the value of this treatment strategy. Transplant surgeons deal with antibodies in kidney patients every day struggling to find them a match. Patients can wait many years on the waitlist before receiving a kidney. Stop the suffering and premature dying! As kidney patients are uselessly suffering and prematurely dying, we as a community need to do everything we can to bring down the number of people on the transplant waiting list. Kidney failure is a battle and kidney patients need to be armed with everything they need to get off dialysis and receive a transplant. We cannot let something like high antibodies stop us from moving forward. The waiting list has been around 100,000 people for well over 10 years, this is unconscionable, considering the world class medical system that we have. I, along with my fellow kidney patient warriors, call on the government agencies to make further progress in supporting transplantation, beyond what they have already accomplished. The government agencies must make transplants for sensitized kidney patients a higher priority, and the agency can do this by opening the door for more clinical trials, experimental transplants, and more scientific research by applying the world’s best medical expertise and technology we already have into saving these peoples’ lives. I also believe they must re-examine their coverage policies for life-saving experimental drugs because without greater flexibility and coverage, patients like me will remain a mere anecdote in the renewed federal commitment to kidney transplantation. I would think that our scientific medical expertise has the knowledge and ability to find ways to deal with high antibodies in kidney patients so we can get our fellow Americans off dialysis, receive a transplant, and live productive lives.
Anonymous | 01/28/2022
The Spring 2022 Prioritization Exercise is a useful, easy-to-use tool for soliciting people's views on the importance of various allocation criteria. However, its wording for the placement efficiency criterion may, I feel, tend to dissuade participants from assigning it its appropriate importance. The efficiency criterion in the exercise is stated as "A very nearby candidate (e.g., short drive from donor hospital)". There's very little difference in placement efficiency between a short drive vs a moderate drive or even a long drive. The difference in efficiency comes into play when the donor hospital/recipient distance is beyond driving range. The way the criterion is currently stated, it's unlikely anyone will assign much importance to placement efficiency, even though it is a very important criterion. Before very many people participate in the exercise, it would be helpful if that criterion was reworded.