Ethical Evaluation of Multiple Listing
At a glance
Currently, OPTN Policy 3.4 Multiple Transplant Program Registrations allows patients to be registered for an organ transplant at more than one transplant hospital. This policy also allows transplant hospitals to decide whether or not to accept a candidate who is listed at more than one transplant hospital. Additionally, OPTN Policy 3.2 Notifying Patients on their Options requires transplant hospitals to let patients know that the patient is allowed to be registered at more than one transplant hospital. This practice is known as “multiple listing” within the transplant community.
Although current policy allows multiple listing, there have been several different attempts to remove the policy in previous decades. The primary ethical concerns are equitable access to transplantation and whether multiple listed patients have an advantage over patients listed at only one transplant hospital.
- Ethical analysis of allowing patients to list at more than one transplant hospital and accept organ offers at more than one transplant hospital simultaneously
- Applies the ethical principles of organ transplant to the multiple listing topic – these principles are: equity (which includes distributive justice and procedural justice), utility, and autonomy
- Includes sociodemographic data on the use of multiple listing
- Considers disparities in patient access and recommends how to promote equity in access for patients
- What it's expected to do
- Provides an ethical analysis of multiple listing through the ethical principles that apply to organ transplant
- Recommends to the transplant community that multiple listing should apply and be used to increase equitable access to transplantation for medically complex or otherwise hard to match patients
- Recommends that transplant hospitals should not be allowed to deny medically complex patients from multiply listing at their hospital
- Recommends that transplant programs give extra support to medically complex patients
- Recommends that support and transparent information is given to patients to aid them in choosing a primary transplant program that is the best fit for the patients’ needs, preferences, and values
- What it won't do
- There are no changes to policy
- There are no changes to allocation
- There are no changes to data collection
Terms to know
- White paper: A white paper considers a complex issue and develops a position.
- Ethics Committee’s Scope: The Ethics Committee makes recommendations to OPTN Board of Directors for changing, creating, or eliminating policies if warranted by ethical concerns.
- Multiple listing: being on the transplant waiting list for the same organ type at more than one transplant hospital
- Equity: The ethical principle of equity, in organ transplant, refers to removing barriers in access to transplant so that those with fewer resources still have equal access to information on transplant programs.
- Distributive justice: The ethical principle of distributive justice dictates fairness in the distribution of scarce resources so that similarly needy patients have an equal opportunity to benefit from transplantation.
- Procedural justice: The ethical principle of procedural justice, in organ transplant, ensures a commitment to treat cases similarly, transparently, and predictably.
- Autonomy: The ethical principle of autonomy, in organ transplant, refers to one’s ability to be self-directing, decide what happens to oneself in the future, and the ability to be a part of decisions regarding one’s own medical treatment.
- Utility: The ethical principle of utility, in organ transplant, refers to creating the most benefit to the transplant community (i.e. promote graft survival, reduce waste, improve efficiency).
Jane Juliano | 03/16/2023
I strongly oppose any change to an individual's ability to list at multiple transplant centers and center's. Poor or isolated patients should retain the ability to list in other communities. Hospitals should evaluate all patients without regard to whether they are listed in other hospitals, however they would still consider distance.
Laura Burns | 03/16/2023
I believe people should continue to have the freedom and right to list at more than one hospital. Some people have medically complex situations that might cause one hospital to not list them; hospitals may have different criteria for listing.
Some have suggested multiple listing is an equity matter. I believe it is an education and resource matter. There are resources available to support those who are economically disadvantaged to list in multiple places. People need help with navigating the system. UNOS should offer that help and be a clearinghouse for resources to support multiple listing travel.
I, myself, am a perfect example. When my lungs began to fail, I was 65 years old free-lancer, living under the poverty level, having been unable to get any health insurance for years. I have a B+ blood type, and am 4'1, living in central Texas. I was told when I was listed that it would be difficult to find a donor match. I was told that it would be difficult to find a match and I should expect a long wait and possible death on the wait-list. Because I had to be within 4 hours of my transplant location, I did not have the possiblity of multi-listing in many centers. However, though I was poor, I had the educational ability to pursue all my options, and I was ready to pursue multi-listing, rather than die. By some miracle (for me, not her), 3 weeks after my being listed a 22-year old 5'2" type B+ young woman died and I got the call.
Rather than deny everyone the possibility of getting the best match for a transplant for "equity" reasons through multi-listing, OPTN should focus on enabling everyone to be empowered to know how to multi-list.
Anonymous | 03/16/2023
If people wish to multiple list to enhance their ability to receive a transplant particularly those who have special circumstances for example sensitization, high wait times in their region, then they should be able to do so.
Cathy Perkins | 03/16/2023
Understanding the importance of equality, equity etc, what would you do if it was your child, regardless of age, relative, husband or wife etc , if they needed a life saving organ? Would you not do anything possible to save their life? Is it fair because you live in a city that the waitlist is 5 years? Is it fair if your doctor recommends not to be vaccinated because of 7 auto immune diseases and you find out your transplant center will not list you? Or after listing tells you they won’t then transplant you after being on a list 2 years? (I have a friend in this situation.) This is sometimes life or death and all in life is not fair and never will be. I understand we are trying to get there.
I had a kidney transplant almost 3 years ago and would have done anything to get on multiple lists had I not had a living donor.
Also, there are so many inconsistencies in Transplant Centers as far as “rules” before and after transplant. Is that fair and equitable?
UC San Diego Center for Transplantation | 03/15/2023
The UC San Diego Center for Transplantation appreciates the Ethics Committee's insights into this long standing debate; and while we generally agree that transplant centers should be prohibited from declining to accept candidates that are or would like to pursue multiple listing, we do not agree with the recommendation that the option of multiple listing should be limited to those who are hard to match or medically complex.
The transplant process is incredibly complex and candidates face multiple challenges to simply being approved for listing at a single center, let alone the right center or multiple centers; and there are many logistics not accounted for in the analysis that are in fact relevant for consideration. For example, candidates who may have the means to split their time geographically (snowbirds or pediatric candidates who may split time between parents) and would not necessarily unfairly benefit from multi-listing.
Proposing solutions such as creating scholarships to cover housing or other expenses, redistributing resources to promote with health literacy, waiving residency criteria, and lobbying insurers to cover additional transplant evaluations are worthy concepts and perhaps should be emphasized in the context of the challenges and barriers patients face in accessing care for lawmakers when the efficacy of the system is called into question.
If the intent of continuous distribution is to, “get the right organ to the right patient at the right time,” should the Committees not seek to define “hard to match and medically complex patients” and incorporate these attributes into the allocation algorithms? The removal of hard boundaries should eliminate the need for the multiple listing policy but not the availability of the option.
Society for Pediatric Liver Transplantation | 03/15/2023
The Society of Pediatric Liver Transplantation (SPLIT) would NOT recommend elimination of the multi-listing option for pediatric candidates. Living donor liver transplant (LDLT) has been shown to decrease waitlist mortality and improve patient and graft survival for pediatric liver transplant recipients. However, center experience and surgical expertise with LDLT significantly varies. Less than half of all pediatric LT centers perform ³5 LDLTs/year. It is important that each child have at minimum the ability to list at a geographically convenient center (their home program) as well as a center that provides LDLT (as well as other technical variant graft options). We are concerned that limiting listing to a single program could exacerbate socio-economic and racial disparities in access to grafts. To ensure equity, we would encourage the committee to look further into the following issues:
Do all insurance policies cover LDLT?
Do all insurance policies cover multiple evaluations?
Do all insurance policies cover multi-listing?
What resources (informational sheets, videos, websites, etc.) are available to ensure that all families receive standard education about LDLT, technical variant grafts, and the ability to be evaluated/listed at multiple centers?
What resources are available to financially support families undergoing multiple evaluations?
How can centers work collaboratively to ensure that all children have access to all liver graft types regardless of where they live?
American Society of Nephrology | 03/15/2023
Dear Dr. McCauley and Dr. Ladin:
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) white paper “Ethical Evaluation of Multiple Listing.”
Please find ASN’s complete comments in the attached PDF.
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 Ethics Committee, to achieve this goal. As ample research demonstrates, many aspects of our nation’s kidney health ecosystem, including those related to kidney transplantation, are not equitably available to all patients. Significant disparities in transplant access and outcomes exist along racial/ethnic, socioeconomic, geographic, and other lines, and ASN is dedicated to addressing these gaps and increasing health equity.
ASN is concerned, however, that the recommendation advanced in the white paper “Ethical Evaluation of Multiple Listing,” to eliminate patients’ ability to list at multiple centers may have unintended consequences that will make it more difficult for patients to access kidney transplants than under the current system without meaningfully advancing equity. The society wholeheartedly supports OPTN and the Ethics Committee’s emphasis on “revising policies that entrench [health disparities]” and respectfully urges OPTN and the committee to focus its efforts to achieve this goal by reforming other aspects of the system to reduce inequities, particularly inequities in accessing multiple listing, discussed in more detail throughout this response and listed in Appendix 1.
Rather than limiting many patients to the lowest common denominator of access (at a maximum of just one transplant center), at this moment in time, our efforts should be focused on helping more patients overcome individual, institutional, and systemic barriers that impede their ability to maximize their likelihood of getting a kidney transplant at the transplant center(s) most likely to help them succeed, in accordance with their individual care goals.
In sum, ASN appreciates OPTN’s and the committee’s dedication to ensuring equity in kidney transplantation and is grateful for the opportunity to provide input on this white paper. ASN also acknowledges that many other simultaneous changes to the current kidney health ecosystem must occur urgently to achieve the goal of maximizing access to transplant and ensuring that access is equitable. The society stands ready to work with OPTN and the committee on the many recommendations included in this letter as well as towards other shared goals. Please contact ASN Strategic Policy Advisor Rachel Meyer at email@example.com with any questions or to discuss this letter in more detail.
Sincerely, Michelle A. Josephson, MD, FASN President
Mary Anne Razim-FitzSimons | 03/15/2023
I am writing in support of continuing the policy allowing transplant candidates to list at more than one transplant center. There are legitimate reasons why a person needing a transplant would need the option to list at more than one center. A person who is medically complex or who has a rare, transplant-necessitating disease may face changing transplantation policies at the center where they’re listed, as transplantation programs can and do change the criteria for transplanting these vulnerable patients. Older transplant candidates may “age out” of the program where they are listed, while the policies at a second program may be more liberal. Patients who have a high CPRA may need the broader potential donor pool that being listed at separate geographic regions will provide. There are any number of reasons why a patient and their physician would find it in the patient's best interest to list with more than one program, and this choice should not be taken away.
Restricting “ordinary people” from listing at two centers will not prevent the wealthy and well-connected from gaining greater access to transplantable organs than the rest of us have. A Steve Jobs will always be able to access medical care that a Joe Miller cannot. It’s fantasy to think that changing everyone’s ability to list at multiple centers will reduce in a meaningful way the advantages that wealthy and well-connected patients have always enjoyed. All it will do is take options away from the teacher, the nurse, the electrician, the florist, and every other ordinary transplant candidate who needs to list at more than one center. And most, if not all, transplant programs have social workers who can and do help patients navigate the educational and insurance mazes which may hinder some people from listing at more than one center. Rather than restricting patient choices in this matter, we can and should devote more resources to helping all patients find ways to access the best available organs for them, at the centers best equipped to perform the surgeries.
Region 6 | 03/15/2023
1 strongly support, 8 support, 3 neutral/abstain, 1 oppose, 1 strongly oppose
During the discussion several attendees commented that this was an important paper but thought more data was needed around medically complex patients as well as how multiple listing affects waiting times and transplant rates. Another attendee commented that financial and logistical support from Medicaid and other insurance payors needs consideration when a patient multiply lists. One attendee suggested having a review board to review requests to multiple list. Several attendees supported the paper and applauded the committee for addressing this inequity and bringing it to the forefront. One attendee raised concerns about medically complex patients traveling to get a transplant and their access to care post-transplant given that they often have a higher likelihood of complications. Another attendee commented that limiting access to multiply list may result in less access for our Veteran patient population. One attendee commented that Veterans who travel to VA centers to get transplanted and then return home usually do very well. Several attendees commented that patients should not multiply list in the same donor service area. One attendee commented that there needs to be increased transparency so that patients know about multiple listing criteria and also make sure payers understand the options. Another attendee commented that the inequality may reflect a disparity in patients ability to travel and suggested getting data relative to travel benefit related to insurance. They went on to recommend we encourage state and federal benefit allowance for candidates travel.
National Kidney Foundation | 03/15/2023
Region 11 | 03/15/2023
2 strongly support, 8 support, 7 neutral/abstain, 4 oppose, 3 strongly oppose
A member commented that multiple listing fulfills the principles of autonomy and justice but questions whether it fulfills procedural justice. Another member stated that even though there needs to be some adjustments to how multiple listings are handled, every patient should have the autonomy to multi-list. Other members agreed and added that loss of revenue should not be a consideration and that multi-listing leads to getting transplanted sooner due to the great variability in access to organs. Members commented that dialysis centers refer patients to multiple hospitals and that although transplant hospitals are advocates for multiple listing, they are not competing for patients. Several members expressed concern that multiple listing benefits more socioeconomic advantaged groups. One member stated that there is an expense burden when one hospital evaluates a patient and then another hospital uses that data to list and subsequently transplant the patient but then the first hospital does the follow up. Another member commented that indiscriminate multiple listing should be discouraged to conserve resources. A member suggested that technology innovations should be considered to facilitate sharing of information among transplant hospitals. One member commented that medically complex patients are best cared for by a transplant in close proximity.
OPTN Minority Affairs Committee | 03/15/2023
The Minority Affairs Committee thanks the Ethics Committee for the opportunity to provide feedback on the Ethical Evaluation on Multiple Listing. The Minority Affairs Committee recommends the Ethics Committee consider subgroups that are hard to match to ensure that the Ethics Committee’s recommendations do not play a role in widening disparities. The Minority Affairs Committee noted that the data shows only a small segment of the cohort traveled a significant distance to a second center. The Minority Affairs Committee added that socioeconomic differences may not play as significant a role when considering a candidate who lives in more of a rural setting, as these candidates may not have as many options for transplant centers.
The Minority Affairs Committee agrees that centers have different behaviors regarding risk tolerance and suggests that the Ethics Committee consider how to educate patients on becoming familiar with this concept. The Minority Affairs Committee also noted the importance of pediatric candidates’ access to multiple centers.
Jennifer Lau | 03/14/2023
Multilisting for transplant of children with complex histories requiring specialized care, and those seeking the possibility of living donation, could be essential. I fully respect and understand equity in transplantation and having access for all, but the unintended consequence of trying to provide equity for all could in fact deny it to someone who needs it the most. A question I have is there any data on multilisting outcomes? I also ask that you look at other avenues such as patient education in listing discussions and access to all options.
Joseph Hillenburg | 03/14/2023
As a pediatric recipient parent, I concur with the comment provided by Transplant Families.
Anonymous | 03/14/2023
While I support the ethical review, my opinion is that multiple listing should not be permitted, however UNOS *HAS* to come up with a more equitable distribution system so that multiple listing is not viewed as necessary. Transplantation is already a financial obstacle for many and allowing those who can afford travel and associated costs to cross post is unfair. On the other hand, the allocation system is broken and I don't blame anyone trying to play the multi-listing game.
Region 7 | 03/14/2023
4 strongly support, 4 support, 1 neutral/abstain, 5 oppose, 1 strongly oppose
Members expressed concern that this restricts access without presenting a plausible solution; someone well connected could still game the system by being classified as medically complex so still does not level for socioeconomic status. Several members commented that it is important to reduce socioeconomic disparities in access to transplant but restricting multi-listing and patient autonomy may not accomplish that as more advantaged patients will still be able to have multiple evaluations and travel to a center more likely to transplant them. Geographic disparities, access to organs, and behavior differences across centers impact the likelihood of transplant. A member commented that for a patient who is challenging to transplant, such as a highly sensitized patient, finding a center that will take the risk to transplant them is more important than multi-listing; allocation changes to prioritize the highest PRA patients has addressed some of the geographic advantages. A member suggested there should be a mechanism to allow people to quickly cancel their listing at one center and list at another as they learn more how individual centers approach their circumstance. Another member commented that it is important to keep the patient as top priority as the patient, transplant program, and insurer work together and keep autonomy for multiple evaluations. A member commented from an OPO perspective that addressing disparities in socioeconomic status would improve trust in the system, resolve concern that their loved one’s organs will not be fairly allocated, and hopefully impact willingness to consent to donation. One member stated that they are appreciative of the work and thinks the best solution is to find a way to best connect a patient to the best program for them from the start; transparent selection criteria may help patients identify the best center and avoid the need for multiple evaluations. Members commented that all patients should have equal access to transplant, especially pediatric patients and a request to include data on pediatric multi-listing was made and that the white paper accomplishes the purpose of generating thought and critical discussion.
Region 1 | 03/14/2023
2 strongly support, 3 support, 1 neutral/abstain, 4 oppose, 1 strongly oppose
Region 1 had mixed feedback on this paper. Several members commented that continuous distribution will probably impact this, so the committee should revisit this analysis once it is implemented. Some also added that while the analysis was good, the recommendations may not be appropriate due to the implementation of continuous distribution and the impact of broader sharing. A member remarked that rather than limiting multiple listing, if it is found to be a benefit to patients, we should instead be working on ways to make it accessible to everyone. An attendee stated that their institution strongly supports reducing differences in access to transplantation. Another member said that to respect patient autonomy, every patient should have the opportunity to multiple list. An attendee commented that the benefit of multiple listing is finding a center with a shorter time to transplant, so patients with the ability to travel will still be able to make that choice even if multi-listing is not an option anymore. A member was surprised that the difference in multi-listing was not bigger in payors and education. Another attendee remarked that the analysis does not include differences in center practices, which can impact whether a candidate receives offers. An attendee commented that distance is the single most important thing and as long as the committee keeps that in mind, their recommendations may hold weight. A member stated that multi-listing probably exacerbates disparities in access to transplant, and that many patients barely have the means to get to one center, having to also find means to get to an additional center is unthinkable.
OPTN Patient Affairs Committee | 03/14/2023
The OPTN Patient Affairs Committee strongly supports patient autonomy, access to multiple listing, and ensuring that patients are aware of their absolute right to seek care to keep themselves alive. To this end, the Committee recommends increased education and improved tools for patients and providers to improve access to multiple listing. Patient education should be in plain language and transplant programs should seek confirmation from patients that they understand the potential benefits of multiple listing. Such education could include transplant program score cards that are easy to provide to candidates with less digital literacy; technology aided tools to assist referring providers in getting patients to the right transplant program; a comprehensive online repository with contact numbers and referral pathways; side-by-side comparisons regarding the patient experience at a transplant program; and counseling throughout the transplant journey. The Committee supports multiple listing for patients who are hard to match, and holds that information on transplant programs who are more likely to transplant these patients should be readily available, for example, on the OPTN website.
The Committee notes that insurance coverage and other financial issues are barriers to multiple listing, as well as to listing at a single transplant program. Members recommend making grants available to assist patients with the costs of travel and housing. Additionally, patients who happen to have support systems across the country should not be denied the opportunity to multiple list. While the Committee recognizes that those with more privilege are more likely to be able to multiple list, and could take an organ from someone in need, members do not see the small percentage of candidates who are multiple listed as a major contributor to disparity in transplant access. Members recommend further consideration of the effects of continuous distribution on multiple listing. The Committee was split on whether this white paper should move forward to the Board. Additional comments from Committee members are submitted as an attachment.
Transplant Families | 03/14/2023
We thank the Ethics committee for its thoughtful work in this area. The following is feedback representing caregivers and parents of pediatric transplant recipients regarding pediatric multilisting only. We feel the Ethics Committee should consider a few more points before finalizing. Multilisting for transplant of children with complex congenital and acquired diseases that require specialized care could be essential for some in ensuring that these children receive the best possible care and increase their chances of finding a suitable organ match. Transplantation of organs in the complex often addresses increased antibodies, which often further limits the candidate's ability to find a suitable match, and having access to multiple transplant centers can increase the likelihood of finding that match. We also want to bring to light how coverage for potential pediatric recipients with living donors is sometimes handled by multilisting. We respectfully understand that the committee and centers are cognizant of equity and/or access issues that might afflict some patients and families. However, we believe that equity issues could (and should) be mitigated with appropriate patient education around listing through multiple centers just as much as supporting a second opinion. We have seen Medicaid cover families of all socioeconomic levels for multilisting if the child is complex, hard to match, and the family has been included as a critical part of the care team with informed consent. The care family will feel good about collaboratively exhausting all options when included in decision making. If other organizations are not limiting access, why is the OPTN? Here the unintended consequence of trying to provide equity for all could in fact deny it to some of the very people that need it most. Therefore, we implore the ethics committee to re-evaluate their stance with a patient centered care view that includes patient education, inclusion in listing discussions, and access to all options.
American Society of Transplant Surgeons | 03/14/2023
The ASTS strongly opposes the OPTN Ethics Committee white paper proposal of limiting patients’ access to multiple listing. The central argument in this paper is that the OPTN should restrict multiple listing is based on the principle of equity. What is interesting is that the Ethics Committee affirms the ethical justification of multiple evaluations based on patient autonomy to find the center that aligns with their needs, preferences and clinical characteristics because the exact same inequity that the committee is concerned about with multiple listing (e.g., limited to patients with the resources to travel to additional transplant programs for evaluation, attain lodging, receive time off work and potentially pay for an additional transplant evaluation) is present with multiple evaluations. The assumption made in the introduction to the paper is that only patients with financial means have access to the practice of multiple listing because of the amount of time and money it costs to be listed in multiple places. While some patients may choose multiple listing solely because they can afford to do so, other patients may opt for multiple listing for other reasons. They may, for example, have family members in the vicinity of another transplant center meaning they have social support and lodging in two places that have access to transplant centers. They may choose two transplant centers that are geographically close to each other but have varying acceptance practices (e.g., one uses a high number of DCD organs, and one uses a high number of extended criteria grafts). Basing the ethical analysis of multiple listing on equity concerns about potential recipients ignores the fact that there are significant differences about the distribution of transplant centers across the US. While it may be financially prohibitive for some patients to travel by plane, it may be very feasible to travel by car to different centers.
Restricting multiple listings limits patients’ autonomy is in direct conflict with the Final Rule. If organs are allowed to freely travel across the US to eliminate geographic disparities, why should patients be restricted in choosing their transplant center(s)? Both practices aim at maximizing the chances of obtaining a transplant. The patient listed in multiple centers, is still listed in each single location according to the same universal criteria and can still only receive one organ for transplant. These patients are not taking away a unique resource or cheating the system. Moreover, albeit still in need of improvement, many efforts have been made to assure that patients are properly informed about the characteristics of the transplant center they choose. Any patient should be allowed to decide whether, based on the available information about the transplantation metrics of different centers, to opt to enhance her chances of transplantation by adding another center to the one where she is already listed. This might happen within the same urban area or across state lines. Limiting this decision seems to also nullify any efforts to inform our patients about the characteristics of the center where they are listed. The ASTS recognizes that there may many different reasons that bring patients to multiple listing and values patients’ autonomy in making decision regarding which center to choose. This decision about where to seek listing for transplantation should be the sole prerogative of the patient and not regulated by UNOS/OPTN.
OPTN Histocompatibility Committee | 03/14/2023
Candidates need to be educated about their choices related to multi-listing, which should include the comparative waiting times at centers within a certain radius of the initial evaluating center.
There is variation between centers in practices related to listing of unacceptable antigens and use of desensitization therapies, which could impact the donors a candidate is able to accept. This especially impacts patients with a high CPRA, who would need to maintain the option to multiply list. While the Committee would need to define a threshold, at a minimum candidates with a CPRA >98 percent would need to be eligible for multi-listing.
Often, multi-listing involves repeat HLA testing and antibody screening, which increases overall systems cost.
American Society of Transplantation | 03/14/2023
The American Society of Transplantation (AST) appreciates the analysis in, “Ethical Evaluation of Multiple Listing.” Although the data reviewed by the committee suggests there is inequity in access to multiple listing it is notable that the analyses do not demonstrate that multiple listing leads to reduced waiting time. Therefore, the AST is not in favor of limiting multiple listing to address this potential disparity as it is the most restrictive approach possible, rather than maximizing everyone’s possible capacity (i.e., multiple listing) for gaining access to organs. While not all patients have the means to travel, we should respect everyone’s autonomy to choose a transplant program(s) and not be paternalistic. The AST suggests that the committee provide additional recommendations for how to provide the financial and logistical support needed to ensure that those who will benefit the most from transplant have appropriate access to listing, including access to multiple listing for difficult to match candidates who could potentially benefit.
In addition, as continuous distribution frameworks are implemented into allocation polices for each organ type (and include score components intended to reduce inequities in access to transplant), the considerations related to multiple listing and the impact on candidates will likely be substantially different. The AST strongly recommends that the OPTN defer consideration of any policy changes in this area until after the continuous distribution allocation has been implemented and the impact on the issue of multiple listing evaluated for all organs.
American Society for Histocompatibility and Immunogenetics (ASHI) | 03/14/2023
This proposal is not pertinent to ASHI or its members.
OPTN Liver & Intestinal Organ Transplant Committee | 03/14/2023
The OPTN Liver and Intestinal Organ Transplantation Committee thanks the OPTN Ethics Committee for their efforts on formulating this white paper.
In reviewing the white paper, one Committee member mentioned that his or her transplant program lists all of their liver transplant candidates at multiple transplant programs, which may account for the majority of multi-listing candidates in the data analysis included in the white paper. This is something the OPTN Ethics Committee should take into account when discussing multiple-listed candidates, regardless of socioeconomic background.
The Committee was also concerned about any potential impact on a candidate’s ability to compare different transplant programs and choose the transplant program that best suits their needs.
In addition, the Committee suggests reviewing any available data on differences in waitlist mortality between single listed and multi-listed candidates.
The Committee also encourages the OPTN Ethics Committee to consider how state Medicaid coverage and restrictions may impact any candidate’s ability to access either multiple listing or multiple evaluations for transplant.
And finally, the Committee suggests that the OPTN Ethics Committee review any available data on the timing of the registrations for candidates who are multi-listed. Sometimes, when a candidate is transferring between two programs, the candidate can be listed at both programs for a period of time, even though their goal is not to be multi-listed.
The Committee appreciates this work of the OPTN Ethics Committee but remains concerned about the data used to develop the recommendations included in the white paper.
OPTN Lung Transplantation Committee | 03/14/2023
The OPTN Lung Transplantation Committee thanks the OPTN Ethics Committee for their white paper and the opportunity to provide feedback. The Committee was overall in support of this white paper. The Committee agrees that hard to match candidates should have access to multiple listing, and that multiple evaluation is essential for the lung community. Members also noted that the implementation of continuous distribution of lungs should reduce the need for multiple listing. This is because biological disadvantages such as calculated panel reactive antibody (cPRA) score and height are now going to be attributes factored into a candidate’s composite allocation score, so the need to list at multiple centers will be reduced. Members also agreed that education, geography, and socioeconomic status are barriers to multiple listing and will create inequities. One member noted those with a lower social deprivation index are more likely to utilize multiple listing. The Committee commends the OPTN Ethics Committee for their work on this paper but emphasizes the need for multiple listing in lung for hard to match candidates.
OPTN Transplant Administrators Committee | 03/14/2023
The Transplant Administrators Committee thanks the Ethics Committee for their efforts in developing this white paper.
TAC members offer the following comments and questions:
Insurance companies restrict some patients from multi-listing, including Medicaid patients not being allowed to list outside their state.
Concern about equity as some patients can multi-list while other cannot, whether that is due to insurance or financial issues. Additionally, some private insurers require their patients go to a “center of excellence” and only certain centers are on that list.
Suggestion to seek input from the Patient Affairs Committee.
Question about how many patients are transplanted at their “home center” versus at the second center where they are listed. Some patients could multi-list within their own metropolitan area if there are multiple transplant centers.
NATCO | 03/14/2023
NATCO supports equitable access for everyone in need of an organ transplant, in line with NOTA. This white paper does answer the ethical implications of multiple listings. The papers findings are that widespread use of multiple listing may undermine equity and utility, and that it should be reserved for medically complex and/or hard to match patients. However, restricting multiple listing limits patients autonomy, choice, and care. There is also the task of defining who would be medically complex and hard to match. This paper does not consider that multiple listing would create additional costs including travel and lodging. NATCO believes that there are additional considerations needed to address equitable access to transplant and that restricting multiple listing options for certain patients would not address the problem
Region 8 | 03/14/2023
0 strongly support, 9 support, 5 neutral/abstain, 5 oppose, 2 strongly oppose
Region 8 mostly supports this proposal, but some members were in opposition. An attendee pointed out that multiple listing is an important topic to consider and multiple listing can be effective for difficult to match candidates. An attendee inquired about the implications of continuous distribution on multiple listing. An attendee commented that the white paper doesn't address how the need for multiple listing will be affected by implementation of continuous distribution which also intends to address difficult to match candidates. Discussion suggested that both continuous distribution and multiple listing seem to have the same objective of equitable matching. Attendees suggested to wait and see how continuous distribution implementation impacts multiple listing before making change to the multiple listing policy. An attendee pointed out that two thirds of all double listed liver patients in the U.S. are due to a centers’ practice of double listing all patients at two programs. The member said this has to be taken into account in the data analysis.
An attendee explained that he was troubled by the fact that candidates have the ability to multiple list – he thinks that multiple listing shows disparity in means, access, information, etc. And this needs to be handled on a national level because transplant programs will always operate in silos. An attendee cautioned that the data in the paper is from peak pandemic and should be cautiously interpreted.
An attendee pointed out that travelling will still exist even if multiple listing doesn’t – and candidates with financial means can and will travel to areas where there are lower waiting times. Regarding equity in listing versus access to listing – there is no part in paper showing how many candidates are multiple listed. Several attendees pointed out that the paper limits candidate access where the candidate has parents in multiple locations. The paper also limits people who seasonally live in different locations. The member said there will still be limits in populations who need to be able to list across different locations. For medically sick patients, they get better care with more access. Several attendees said the option to multiple list should be available to all candidates, irrespective of whether or not they can do it. Several members said the transplant centers’ goal should be helping candidates get transplanted at the earliest point possible, even if it is not at their center.
OPTN Transplant Coordinators Committee | 03/14/2023
The Transplant Coordinators Committee thanks the Ethics Committee for their efforts in developing this white paper.
A member agreed with the Ethics Committee’s findings because her transplant program recently had a patient who was listed at four different centers and had the resources to travel anywhere to get a kidney transplant. At the same time, she had a patient who lives two hours away and doesn’t have transportation to get to the transplant center to receive care. She also opined that patients who multiple list are typically wealthier, more educated, and have the resources to travel. She also noted there is a difference of opinion amongst the coordinators at her program. Coordinators who have been at the transplant program for less than two years tend to favor multiple listing while the coordinators who have been around for ten plus years are opposed to it.
A member commented about the differences in organ offer acceptance practices across programs. Some centers have access to normothermic regional perfusion (NRP) technology or provide donation after circulatory death (DCD) options that could allow quicker access to a transplant. She added that it is challenging to educate patients and be transparent about the options available to them. For example, if a patient is listed at a transplant center that does not routinely use DCD organs, the patients might not be aware of it. Therefore, the advantage of multi-listing is access to more organs than what is available at their “primary” center.
A member agreed that socioeconomic challenges for multi-listing will likely prevent patients from getting multiple evaluations. Patients can spend a lot of resources at one center which will restrict them from accessing evaluations at other centers. Another member agreed that patients who have the resources for multiple evaluations are the same individuals who will seek multiple listing.
A member commented that multiple listing is creating a system where the patient is going to the organ while allocation policies should be getting the organs to the patient, otherwise there will always be disparities in access. Improved allocation could eliminate the need for patients to multi-list.
A member noted that health insurance also has an impact on multiple listing. For example, pediatric Medicaid patients in Kansas only have one transplant program in Kansas City, while Missouri patients have both Kansas City and St. Louis. Patients in certain areas of Oklahoma must get a medical exception in order to seek transplant services in Kansas City. Another member noted that pediatric Medicaid patients in New Hampshire, Vermont, and Maine must travel to Boston, further illustrating that some patients that have no control over where they seek transplant services.
A member also noted that pediatric patients might have less flexibility in their schedules for appointment. For example, they might be limited to summertime due to school schedules. She added the same might be true for adults with higher education, as they might have greater flexibility with their job schedules or more access to time off. A member noted that while we can’t control these types of disparities, but we can control the utilization of organs.
A member asked if the multi-listing data could show the geographical locations for the multiple listings. For example, are these candidates getting multiple listed near their homes or across the country. If it is occurring locally, then it could be more of an educational issue than an economic one.
The member also added that establishing exceptions for such things as medical urgency could open up legal challenges for patients that also want this option.
A member noted her experience working at a kidney transplant program in Detroit which only had one OPO. A patient could drive to Toledo and get a transplant sooner. However, those with limited insurance options do not have that opportunity. She added that patients have the right to be multi-listed, but insurance might restrict the practice and some transplant centers will not allow multi-listed patients.
Committee members shared differing experiences about whether their centers allow multiple listing. A member noted that multi-listing makes sense in certain situations such as candidates living in multiple locations or a pediatric candidate with parents living in different parts of the country.
Anonymous | 03/13/2023
This is not a equitable policy. Lobbing needs to be done for insurance, Medicaid and Medicare to pay for multiple evaluations and listings including travel to other centers. Until this is done, this is a policy for the rich and educated and the data supports this. We will continue to see headlines like "Did Steve Jobs' money buy him a faster liver transplant?", "Hospital where Jobs received transplant given $40M" and "Steve Jobs used his advantages to get a donated liver. Should it have gone to somebody else?"
Lorrinda Gray-Davis | 03/10/2023
International Society for Heart and Lung Transplantation | 03/10/2023
ISHLT supports this white paper which is a very comprehensive and well written analysis that effectively lays out the pros and cons of multiple listing and provides OPTN data to support the conclusions and recommendations made. Although the adoption of continuous distribution policies are also intended to address some of the issues with difficult to match candidates for which the Committee supports maintaining multiple listing options, if implementation of those policies do not achieve their goal, this white paper will serve as a good resource in the event that the OPTN Board of Directors chooses to pursue the recommended policy changes.
Lisa Guertin | 03/10/2023
As we evaluate the barriers to transplant that patients experience to receive a transplant, many of these are "psychosocial" and financial. For those potential recipients who have limited resources, multi-center listing disadvantages them in getting a transplant; further separating those with limited or under resourced and those with increased resources. That being said, especially those potential recipients with limited resources are essentially stuck with the transplant center in their region, and can be further disadvantaged if that transplant center is not aggressive or has poor SRTR outcomes.
Region 9 | 03/09/2023
3 strongly support, 4 support, 2 neutral/abstain, 5 oppose, 1 strongly oppose
Region 9 had mixed feedback on the paper. Several members expressed concern about the idea of limiting patient choice and access. While some attendees agreed that yes, multi-listing can create disparities, there are so many other disparities in health care and transplant, it doesn’t make sense to limit this option. An attendee added that there are socioeconomic barriers to transplant that multi-listing can help address, so we need to carefully consider how removing the ability to multi-list might impact different groups. A member commented that allowing patients to multi-list is essential, as the last disparity remaining is differences between centers, and allowing patient choice is giving them a voice. An attendee stated that multi-listing helped her get a kidney-pancreas transplant, but that it also comes with an increased financial burden from having to travel to other centers. A member also pointed out that New York state does not allow candidates to list at more than one program in the state, and this is evidence that there is difference in practice across not just socioeconomic status but also geographic region. A member expressed support for the paper because it would be fair for patients. Another attendee stated they were pleased to see the Ethics Committee take up this issue.
American Nephrology Nurses Association (ANNA) | 03/08/2023
Marian Yoder | 03/07/2023
I don't oppose the evaluation, but I do oppose donors no longer having a higher chance of receiving a organ after donating one. We servered out community by giving part of ourselves and we were told if we ever needed a kidney that we would have a higher chance of getting one because of our donation. I believe less people will donate if you take this benefit away.
OPTN Kidney Transplantation Committee | 03/07/2023
The Kidney Committee thanks the Ethics Committee for the presentation and the opportunity to provide a public comment on the white paper. The Kidney Committee supports the Ethics Committee’s goal of equity in patient access. The Committee recognizes the issue of multiple listing is ethically difficult, but believes that the recommendations outlined in the paper will not address disparate access and instead would actually limit patient access. Additionally, the Committee feels there are barriers to access that should be addressed first, such as geographic disparities (ex. an area where there is a limited number of transplant centers). Members commented a patient’s ability to list at multiple centers is not commonly known within the patient community, and recommended developing more education on a patient’s right to multiple list. Members commented the focus of the white paper should be on making multiple listing available for more patients, and resources should be put toward ensuring disadvantaged patients have greater means to multiple list. Members also commented there should be efforts to address insurance barriers and collaboration with end stage renal disease (ESRD) and patient networks to educate the patient community earlier on multiple listing.
Nancy Marlin | 03/05/2023
Patients should be encouraged to seek a living donor while they are accumulating time on the waitlist for a deceased donor. Being able to list at a local transplant center facilitates the evaluation of living donors, while listing at a distant center with a shorter wait time decreases their wait time for a deceased donor. I oppose the elimination of multiple listing; what I think would be more appropriate is to limit listing to one local and one distant center.
Region 5 | 03/03/2023
4 strongly support, 9 support, 6 neutral/abstain, 7 oppose, 3 strongly oppose
Some Region 5 members support this white paper and some Region 5 members oppose this white paper. A member suggested that there will be significant unnecessary consequences if a candidate cannot be evaluated and listed at more than one center. Several members pointed out that there is wider sharing as a result of multiple listing. The member explained the impact is nowhere near the disparity, since waiting time is so high in his area, candidates list at other centers but that removes a candidate from his centers’ wait list, as a result. So, there ends up being a benefit for candidates listed on longer wait time list because of multiple listing. The member thought that multiple listing evens the playing field to some extent. A member institution supported the paper and analysis; but suggested that the Board of Directors not act on it until after continuous distribution allocation models have been implemented across all organs. The transplant process is incredibly complex and candidates face multiple challenges to simply being approved for listing at a single center, let alone the right center or multiple centers. Proposing solutions such as creating scholarships to cover housing or other expenses, redistributing resources to promote with health literacy, waiving residency criteria, and lobbying insurers to cover additional transplant evaluations these are individually focused solutions that will not necessarily solve the systems problem. While it may seem simplest to put the onus of increasing opportunities for transplant by multiple listing on the individual, we would argue this is actually the responsibility of the community and the system which we create. If the intent of continuous distribution is to, "get the right organ to the right patient at the right time," and cPRA has been included as an attribute for the new lung continuous distribution model composite allocation score (presumably, other organs are following suit), should the committees not seek to define "medically complex patients" and incorporate these attributes into the allocation algorithms? The removal of hard boundaries and prioritizing these hard to match and medically complex candidates can and should eliminate the need for the multiple listing policy. A member suggested that the committee consider that the best deceased donor center and the best living donor center might be different centers. We don't want to dis-incentivize candidates from secondary listings at living donor centers (thereby discouraging living donation). A member suggested for the committee to consider older patients and areas of high wait time – does the committee consider older candidates in areas with long waiting time in the "exceptionally hard to match" category for multiple listing since the older candidates might not live long enough to be transplanted in their state. A member commented that eliminating multiple listing without addressing the large topic of geographic disparities in organ availability is unreasonable. Organ preservation techniques have improved to the extent that distant sharing should be a reality. The member pointed out that there are candidates who reside in states without transplant programs, and those candidates utilize multiple listing in order to get access to transplant. A member suggested that the committee provide patient education resource as a part of this white paper – especially a consistent, overarching, educational, national resource from the OPTN. The patients need to know this option and be educated on it. A member commented that multiple listing allows patients to have informed decision making by having several evaluations. Several members inquired about how to define the “exceptionally difficult to match” population, and pointed out that this definition could be different based on organ and age. A member institution said they support the objective of reducing disparities in access to transplant but feel that the analysis creates more questions and does not address critical components such as how we would set criteria for the “exceptionally difficult to match”. They pointed out that as allocation continues to change making the system more equitable as a whole, there will be a reduction on the impact/advantage of multiple listing for those patients who have the resources. A member pointed out that multiple listing should be available to more candidates, regardless of the candidates’ socioeconomic status. From a pediatric perspective, a member advised caution when putting restriction on multiple listing. The member inquired about the impact on pediatric patients and the socioeconomic demographics for pediatric alone. When inquiring about how to define "exceptionally difficult to match?" a member pointed out that all small children could be considered exceptionally difficult to match based on the percentage of the total donor pool that would be appropriate for them. For liver, in particular, they may benefit from evaluation and listing at centers that are more likely to offer living donor, split liver, or ABOi transplants than their "home center". The member inquired if insurance companies support multiple evaluations – particularly after a patient is already listed at a center. The member expressed concern for candidates with public insurance, especially across state lines, and if they will not have the opportunities for multiple evaluations – which will cause disparities to continue.
Mary Beth Stephens | 03/02/2023
We should not support the elimination of dual listing for transplant patients. The primary ethical concerns are equitable access to transplantation and whether multiple listed patients have an advantage over patients listed at only one transplant hospital. The white paper considers disparities in patient access and recommends how to promote equity in access for patients. Restricting multiple listing limits patient autonomy, choice, and care. Restricting access by multiple listing is not going to solve the problem of significant disparities in transplant and, in fact, may create other inequalities. For example, pediatric transplant candidates whose parents are divorced and living far apart may be listed in two centers. Additionally, patients who spend their winters in the southern part of the United States are commonly listed at two centers so they have ready access to transplant. They would no longer have options and would be tied to one center and living close to that center until time of transplant. If multiple listing is reserved only for “medically complex” patients and “hard to match” patients, what is the definition of “medically complex” and “hard to match”? And, if those can be defined, will a patient have to be both, or just being one of these qualify for multiple listing? We have just gone down another rabbit hole of ethical issues. Finally, if patients are restricted to one transplant center, those with monetary resources are able to pick a program with shorter wait times and travel there for listing even though it may not be geographically close to them. Additionally, patients with no resources who list at the center closest to them may experience longer than average wait times because of that specific transplant center's offer acceptance rate. Therefore we have removed their ability to list at another center with shorter wait times. In summary, restricting transplant by removing multiple listing does not increase equity. In fact, it just gives us different inequities. If we truly want to increase equity in transplant, we should concentrate on the greatest inequity of all: insurance coverage, which dictates where someone can get a transplant. We also need to better educate our patients regarding multiple listing. We also need to work with other centers to share testing, such that portions of a transplant workup would not need to be duplicated at more than one center. This would eliminate having to travel to a single center, multiple times, just to get on their list. There is much we can do to improve equity without removing multiple listing status.
Region 10 | 02/28/2023
5 strongly support, 8 support, 4 neutral/abstain, 4 oppose, 1 strongly oppose
Overall, members in the region were supportive of the white paper. An attendee noted that the white paper addresses another way to improve equity in the transplant system. Another attendee added their support of considering how to minimize the impact of policies that allow for better access to healthcare for some, and by default, restricting access for others. Another attendee stated that the principles explored in the white paper are important. In practice, multiple listing is a tool of the socioeconomically advantaged and health literate, and probably exacerbates disparities in access to transplant. Restricting multiple listing would need to be considered from a patient autonomy and legal point of view - it seems like it may be difficult. The paper should provide some clarity on what is defined as "medically complex" if that is going to be the criteria for multiple listing. Another member added that the white paper makes sense since each state's Medicaid will not pay for care in a different state. The fix might be that patients should have access to national insurance. Alternatively, if every transplant program has similar waiting time to transplant, there is less reason for patients to be multiple listed with the exception of difficult to transplant patients (immunologic or anatomic). However, we should not prevent patients from multiple listing. Single center listing would help programs keep patients, but if patients have access to a center outside the DSA where the wait time is shorter, the patients should have that opportunity. Getting patients transplanted earlier has greater patient benefit rather than waiting longer for a transplant, which may ultimately preclude patients from getting transplant at all due to severity of illness. Another attendee noted that encouraging ways to multiple list for harder to match candidates is sensible, but we cannot ethically stop others who are not hard to match. It is the patient’s choice, and education matters. Lastly, another attendee noted their strong support for the white paper, with the caveat that poorly performing OPOs be held accountable, as that is a large part of wait time discrepancies.
Region 3 | 02/24/2023
0 strongly support, 3 support, 2 neutral/abstain, 5 oppose, 5 strongly oppose
Region 3 did not support this proposed white paper. During the discussion, several attendees commented that they did not support limiting patient autonomy or restricting patient choice and care. One attendee added that patients are often not comfortable severing ties with their current center when pursuing being listed at more aggressive centers. Another attendee recommended making it easier for all patients by lowering barriers to multiple listing. One attendee commented that multiple listings is not our most pressing ethical issue and opined that limiting patients’ ability to multiple list does not solve the problem of significant disparities in access to transplant.
OPTN Pediatric Transplantation Committee | 02/23/2023
The OPTN Pediatric Transplantation Committee thanks the OPTN Ethics Committee for the presentation and the chance to provide feedback. The Committee asks the Ethics Committee to keep in mind the following considerations.
The Committee is supportive of the ability for all patients to seek multiple evaluations and agrees that in most cases, multiple listing should be reserved for medically complex and hard to match patients. The Committee recommends further work elucidation of how “medically complex” and “hard to match” should be defined and additional transparency for patients/families as to which patients benefit from multiple listing from a clinical or geographical standpoint. While the desire to multiple list all pediatric candidates is noble and related to patient/parent autonomy, it clearly expands some disparities in access to transplantation. While some concern about parent and candidate autonomy is noted, the Committee would like to underscore that disparities among children are the least tolerable and that elimination of disparities such as this should be a top priority.
While the Committee agrees that multiple listing can exacerbate disparities, more education, policies, and elimination of barriers around multiple evaluation are needed before any concrete recommendations can be made. Significant effort should be devoted to reducing disparity without taking away access to multiple listing, such as providing more resources to allow for multiple evaluations and utilizing telehealth. The Committee notes that multiple listing is appropriate for some candidates in some cases and suggests that the Ethics Committee further investigate practices around multiple evaluations in the hope that each candidate will end up at a center appropriate for their needs, before artificially leveling the playing field by disallowing multiple listing for everyone.
Chloe Vignola | 02/23/2023
Overall, the potential that this policy intends to accomplish could offer a beneficial route for patients who have had an unfortunately difficult time navigating the transplant list. Multiple listing allows those who live in underserved or rural areas to branch out and access transplant lists from locations that may have better resources. Supporting the patients that are complexly vulnerable is essential and the way I interpret the proposal, it seems that this is kept at the forefront. However, the deeply grey area from this proposal is about choice. How are we meant to choose exactly who is deemed the most medically complex? There are certain diagnosing standards, such as through ICD-10 coding, however this may not be enough to be a deciding factor. What would the check and balance be here to evaluate which patient is more medically complex than the next? How can we compare one severe illness to another to allow a clear choice of who might be more "deserving" of multiple listing? There are many standards here that need to come into play to ensure that this is not hindering any patient's already complicated journey within the transplant listing.
Region 2 | 02/21/2023
2 strongly support, 7 support, 6 neutral/abstain, 8 oppose, 2 strongly oppose
Overall, members in the region did not support the Ethics Committee’s white paper. A recipient attendee spoke to their experience navigating the transplant system and there were only three programs in the country willing to list them. The attendee added that there needs to be more options for patients in similar situations. Several attendees noted this is a controversial topic, but removing the ability for patients to multiple list would be a detriment to the overall system and would restrict patient’s autonomy. Another attendee added that patients with a lower socioeconomic status, have public insurance, or live in underserved areas have less access to multiple listing, but these are problems that require a larger public policy response beyond multiple listing. It was also noted that there is a need for guidelines to define medical complexity, and the impact of multiple listing on propagating social inequities needs to be addressed promptly. Another attendee added that many disparities and barriers are the result of insurance coverage. The community needs to initiate discussions with CMS with respect to candidates with Managed Medicare or Medicaid plans. Access to care is determined by commercial payor rules, which could limit access to multiple listing. The Regional Councillor did ask why this is an area where the OPTN Ethics Committee decided to focus. There does seem to be better areas for this Committee's focus. There is an understandable sympathy for candidates who multiple list even though it might disadvantage other single program listed candidates.
Region 4 | 02/21/2023
3 strongly support, 5 support, 8 neutral/abstain, 6 oppose, 3 strongly oppose
Region 4 had mixed support for this white paper. Several attendees were not supportive of taking away access for patients to multiple list and did not agree that it would be more equitable. They went on to comment that patients should have the autonomy to make this decision for themselves. One attendee commented that there is no way to equalize center behavior or solve for sociodemographic issues. Another attendee commented that medically complex patients are not the group you want to have travel further if multiply listed. One attendee commented that we should not restrict access for those who multi-list but work on improving access and education for the underserved. Several attendees noted that limiting patient access could lead to lawsuits.
Lisa McMurdo | 02/14/2023
I strongly support the Committee's report. If we want to address the 1 issue that contributes to the contention that "the system is rigged" for the rich & privileged, this is it. Not much has changed since this has been examined a multitude of times, over the years. What is helpful is this new data showing less than 8% actually do double list. So why are we hanging onto this clearly inequitable policy that benefits a few-hurts many, & continues the perception (in this case correct) that UNOS policies help the "haves". The data on race is especially disturbing regarding extra renal transplants, showing that whites predominate in multiple listings. Why do we continue to leave this in place? NYS has had a law which prohibits multiple listing (within NYS-since as a state law it can only apply within the state) since the state NOTA Act was first enacted in approx 1984. We wonder why there is so much Congressional scrutiny of UNOS practices, some of it unwarranted & misguided? Well perhaps if the organization addressed red flag policies, such as this, which are clearly unethical, then the watch dogs would not be so hungry.
matthew mulloy | 02/03/2023
I am frankly saddened that valuable time and resources were spent on the ethics white paper concerning multiple listings. There have been very few things to come out of UNOS/OPTN that I have ever disagreed with more. I understand that there is a problem that is trying to be addressed. However, I have never had a single patient ask me to make the transplant system in this country one that is more restrictive and provides them with less access. There are a wide number of valid reasons a person may seek to dual list other than simply trying to "game the system". The solution proposed seems borderline socialist and I would think, if enacted, would create a large number of valid legal challenges across a wide number of states. Rather than restrict the autonomy of one group of patients to provide a paternalistic benefit to another I would propose that we continue to educate patients as to their options and see if the are other ways to fix the inequities. If there was a proposal to limit the number of centers an individual could be actively listed at to 2 or 3, I could see where that may improve things slightly and still leave patients with an ability to have options. Maybe this an option that could be considered. I would have to ask the ethics committee how many patients waiting for transplant did they talk with before reaching these conclusions? As I previously stated, I have never encountered a single patient awaiting transplant who has asked that we as a community restrict access to transplantation. Academic exercises are great in theory, but it seems that the committee may have lost sight of the forest from the trees while debating ethical definitions and applying them to the transplant community as a whole. I completely disagree with the concept of limiting an individuals right to be listed at multiple centers. American healthcare has been based on access and choice and limiting this for many in order to attempt to help a few doesn't seem the best way to go about solving the problem, but feels more like a cop out.
Lorrindas Gray-Davis | 02/02/2023
This will cause even more issues because it does not address the cost associated with evaluation, travel, lodging, etc. Scholarships are recognized as needed but nothing as to how that can happen.
Andrew Courtwright | 02/01/2023
I appreciate the committee’s comprehensive approach—both normative and epidemiological—to this topic. The data on time to transplant among multiply listed candidates was unexpected and captures some of the tensions between high visibility cases and the more mundane utilization of multiple listing. Two comments:
1) Preserving access to multiple listings for highly sensitized candidates is not merely a matter of utility or fair equality of opportunity. Highly sensitized candidates are more likely to be non-White women, a population that already has reduced access to transplant. A commitment to addressing inequalities in transplant gives particular moral weight to policies such as multiple listings that ameliorate pre-existing disparities. The committee’s argument here could be strengthened with reference to the sociodemographics of sensitized candidates (1-3).
2) In practice, there are several reasons why multiple listings may benefit candidates aside from their being intrinsically difficult to match because of, for example, sensitization. Older candidates who are at risk of “aging out” of a program’s age cutoff have a short time window to transplant, even if they are otherwise not a difficult match. Similarly, candidates who have diseases (e.g. pulmonary veno-occlusive disease; combined pulmonary fibrosis and emphysema) that are at risk for rapid acceleration but have low prioritization scores would also benefit from multiple listings given their short time window before disease progression. Finally, changes in program staff such as the loss of a transplant surgeon or program willingness to take on transplant risk as a result of CMS flagging can change a candidate’s ability to access transplant at a center. In this setting, the ability to access multiple listings would be appropriate, independently of the difficulty that any specific patient may have finding a match. Candidates may, for example, prefer to maintain listing at the original center while programmatic challenges are being resolved but also being listed at another regional center to maintain access to transplant.
1. Higgins RS, Fishman JA. Disparities in solid organ transplantation for ethnic minorities: facts and solutions. Am J Transplantation. 2006;6:2556-2562.
2. Tambur AR, Campbell P, Claas FH, et al. Sensitization in transplantation: assessment of risk (STAR) 2017 working group meeting report. Am J Transplant. 2018;18:1604-1614.
3. Tambur AR, Campbell P, Chong AS, et al. Sensitization in transplantation: assessment of risk (STAR) 2019 working group meeting report. Am J Transplant. 2020;20:2652-2668.
Steven Weitzen | 01/29/2023
The system should be made to allow for multiple listing. If there are inequities, the system should be reorganized or update to make it work, because it is so important. Educating all that are involved would be a big step toward success.
Melanie Everitt | 01/25/2023
Please also address any ethical issues related to patients who can be multiple listed as pediatric and as an adult due to their 18th birthday; and, therefore, have potentially different advantages over other patients with similar acuity who are singly listed.