Comments

Dennis Lyu | 09/07/2023

I am supportive of this correction of points for blood type O patients. I commend UNOS for closely tracking changes brought about by implementation of CAS, and noticing a decline in transplant rates of blood type O patients, and taking corrective measures quickly.
My initial reaction to Blood Type O patients receiving 5 points, with a 4.7 point difference over Blood Type A patients, was that this was too high. The difference between the 25th percentile (19.8534 points) and 90th percentile (23.0630) on the CAS subscore at 3.2 points is less than this. Thus, most O candidates will likely have a higher CAS Subscore than every Blood Type A candidate. But this difference only comes into play for Blood type O donors, which is 50% of the donors. This is similar to the LAS system, where for each unit of allocation or zone with O donors, offers were first made to all O recipients (blood type identical) in that zone, before they were then made to A and B recipients (blood type compatible). With this correction, at a national level, for an O donor, it will be like the former LAS system, where an O donor will only be offered to most O recipients, before being offered to an A recipient. It seems that for an A recipient to supercede an O recipient, the medical urgency will need to be extremely high, as a very ill patient with a medical urgency at 95th percentile only receives 2.2650 total points, not enough to overcome this 4.7 point blood type difference.
While I had initial concerns this may be an overcorrection, when it is only applied to 50% of donors, I trust that UNOS has calculated this to be a fair equalizer for transplant rates among each blood type, and will be closely monitoring this and will make changes as appropriate to make sure the system is fair, and thus whole-heartedly support this change and chosen point system.

UC San Diego Health Center for Transplantation | 09/07/2023

The UC San Diego Health Center for Transplantation appreciates the OPTN Lung Transplantation Committee’s dedication to monitoring the impacts of implementation of the Continuous Distribution model in real time and their efforts to expeditiously mitigate the unintended effect of the Composite Allocation Score’s Biological Disadvantages sub-score calculation.

We support the Committee’s proposal to adjust the rating scale for blood type with the expressed purpose of facilitating more proportional access to lung transplantation for candidates of all blood types and more specifically, to improve access to lung transplantation for blood type O candidates as was initially intended.

We encourage the continuation of routine reviews of waitlist and transplant data trends in the post- implementation era to facilitate the timely identification of other unanticipated issues that may arise as the community gains experience with the new system. We expect that the inherent agility of the Composite Allocation Score will allow any necessary policy modifications to be promptly addressed.

American Society of Transplant Surgeons | 09/07/2023

Attachment

View attachment from American Society of Transplant Surgeons

Anonymous | 09/07/2023

We support the proposed change to the points system by blood type in lung allocation. This would be a positive action, particularly for Blood Type O candidates. We ask for a swift decision and change.

Integris Baptist Medical Center | 09/07/2023

We support the proposed blood type rating scale that will allocate additional points to patients that are O blood type. It is well known that O blood type recipients have a population disadvantage and a longer wait time to organ transplantation due to competing against other O blood type recipients. It is interesting that O blood type transplants declined following continuous distribution (CD) implementation, while it has increased opportunities for transplantation to non-O blood type recipients based on current CAS score metrics; for example, an O blood type donor being offered to a B blood type recipient, ahead of an O blood type recipient. We are concerned the proposed blood type rating scale and points change will only raise O blood type recipient scores but not increase donor allocation to O blood type recipients. We will be interested in seeing post-implementation data it this proposal is approved. One additional suggestion to the committee would be to address the lack of CAS point adjustments due to disease progression, oxygen requirement, 6-minute walk distance, exercise supplemental O2 requirement and gas exchange abnormalities.

American Society of Transplantation | 09/07/2023

The American Society of Transplantation is supportive of the proposal, “Modify Lung Allocation by Blood Type.”

Association of Organ Procurement Organizations | 09/07/2023

attachment

View attachment from Association of Organ Procurement Organizations

NATCO | 09/06/2023

NATCO would like to thank the OPTN for looking at the Continuous Distribution of Lungs and identifying that since the policy was instituted, blood Type O candidates have experienced a decrease in transplants since the policy was instituted. As the CAS was developed to help equalize the biologically diverse outliers in the U.S. population, blood type adjustment will be another part of this diversity that can easily be adjusted if we see a shift in another blood type having fewer transplants moving forward. Although 5 points were allowed for “O” blood type, the most these patients were given was 0.4550, therefore it seems only right to provide them the total 5 points. To give “B” and “A” blood type patients higher points than “AB” is also appropriate as they are not able to receive all types. As we want to make sure that we do not penalize patients who truly are sick, combining the medical urgency with higher points for blood type is most appropriate and efficient. We support the suggested proposal and thank you for addressing this disadvantage while monitoring results moving forward.

Donor Network of Arizona | 09/06/2023

We support this proposal and applaud the committee’s quick action to identify and respond to an outcome that was not predicted in simulation modeling of the composite allocation score (CAS) for lung allocation. Addressing the disparity identified in the proportional access to lung transplant for Blood Type O with the implementation of the CAS warrants swift action to continue to bolster trust in the U.S. donation and transplantation system.

We encourage the OPTN's continuous evaluation of the impact of changes in the organ allocation system across all organs to ensure ongoing improvement with a goal of increasing utilization of organs recovered for transplantation. We appreciate and applaud the rapid efforts to alleviate unexpected and undesirable outcomes.

Anonymous | 09/06/2023

We strongly support the proposed change to the points given for blood type to candidates for lung allocation. Blood type O candidates are being negatively affected by the changes in March and it is urgent that the proposed change be made swiftly. Lives are depending on this important action.

Anonymous | 09/06/2023

I am writing to strongly support the proposed change to the points given to candidates for blood type in lung allocation to provide more proportional access to transplant by blood type. This is an important positive action for Blood Type O candidates who have been negatively impacted by the changes implemented in March of this year. Please act quickly as this proposed change is important to those on the transplant waiting list

Nicholas Avdimiretz | 09/06/2023

Our transplant program strongly supports the proposed amendment, specifically to allot added points for blood type O recipients. This is of particular importance for small pediatric patients who are blood type O, and already at a biological disadvantage for organ matching. Since CAS implementation, we have observed an increase in wait times compared to previous, and a reduction in offers for our small (younger) blood type O pediatric candidates.

We appreciate this action being prioritized as soon as possible for the benefit of our currently listed patients and future candidates.

Anonymous | 09/06/2023

We strongly support the supposed amendment to adjust points given to blood type O recipients in lung transplant consideration. Blood type O transplant candidates have been negatively affected by the system implemented in March 2023.
Thank you for prioritizing this action now.

Cystic Fibrosis Foundation | 09/06/2023

The Cystic Fibrosis Foundation appreciates the OPTN Lung Transplantation Committee’s dedication to mitigating the unintended effects of the initial version of the Composite Allocation Score’s Biological Disadvantages sub-score calculation for blood type O. We strongly support the Committee’s proposal to adjust the rating scale for blood type in the Composite Allocation Score for the purpose of facilitating more proportional access to lung transplantation for candidates of all blood types and improve access to lung transplantation for blood type O candidates.

We further support the continuation of scheduled reviews of waitlist and transplant data trends post-Composite Allocation Score implementation to facilitate the timely identification and correction of other unanticipated issues that may arise, as the Committee was able to do in this case. We expect that the inherent agility of the Composite Allocation Score will allow this to be done much more seamlessly than in the past.

Susan Elster | 09/06/2023

I strongly support and encourage protocol changes regarding the point system for blood type in lung allocation. This change is needed immediately to provide equal access for blood type O candidates for lung transplant. Thank you for your efforts to evaluate and correct this disparity.

Anonymous | 09/05/2023

The data indicate the modification that needs to be made. Why is this even a question? Delay only maintains the inequality in allocation.

Anonymous | 09/05/2023

We are writing to support the proposed change to the points given to candidates for the blood type in lung allocation to provide more proportional access to transplant by blood type. This is an important positive action for blood type O candidates who have been negatively impacted by the changes in March. Thanks for the opportunity to comment and swift action to implement the proposed change.

Chuck Patton | 09/05/2023

The fact that transplants for Type O patients have not meet expectations since the March changes is more than enough evidence to make the suggested modifications.

Anonymous | 09/05/2023

I am an O- blood type and have been on the “Wait” list for five months. I have not even had a dry run! To say I don’t feel like I’m in the game is an understatement. I have always felt being an O- patient has been a disadvantage. I commend OPTN for identifying the disparity with O patients and I support corrective life saving changes to the CAS point system.

Anonymous | 09/04/2023

I am an O negative blood type and have been on the wait list for five months. I have not even had a dry run at this point! To say I don’t feel like I’m in the game is an understatement. I have always felt being a O negative Patient has been a disadvantage. I commend OPTN for identifying this disparity with O blood type patients and support corrective life-saving changes to the CAS point system.

Elizabeth & David Hatcher | 09/04/2023

We are writing to support the proposed change to the points given to candidates for blood type in lung allocation to provide more proportional access to transplant by blood type. This is an important positive action for Blood Type O candidates who have been negatively impacted by the changes implemented in March of this year. Thank you for the opportunity to comment and swift action to implement the proposed change.

Anonymous | 09/03/2023

The current protocol for lung distributions which disadvantages blood type O candidates needs immediate adjusting as recommended. Many seriously ill patients will be given new hope by adjusting this inequity promptly. Time is of the essence.

Anonymous | 09/03/2023

I am an O- blood type and have been on the Wait list for five months. I have not even had a dry run during this period. To say I don’t feel like I’m in the game is an understatement. I have always felt having an O blood type was a disadvantage. I commend OPTN for identifying this disparity with O patients and support corrective, life saving changes to the CAS point system.

Anonymous | 09/03/2023

We are requesting immediate relief be given to blood type O- while the transplant rating procedure is being reviewed for equitableness. Those O- recipients who are currently on the transplant waitlist have been seriously impacted and may be in a life and death situation. Please give consideration to those in dire need. Thank you.

Karen Wilson | 09/03/2023

I strongly support the proposed changes to provide proportional access for blood type O lung transplant candidates. Time is of the essence for blood type O candidates who have been negatively impacted by the March changes and are now waiting longer to receive lungs. I urge swift action to implement the proposed changes. Thank you.

Anonymous | 09/01/2023

Blood type O lung candidates who are in need of a lung transplant have been negatively impacted and discriminated against since March of this year. This obvious discrimination should be changed immediately to remove such biased and unfair treatment of blood type O patients. Everyone awaiting a lung transplant should be treated alike regardless of their blood type. I can’t imagine any reason why this should not be the case. This change should be implemented immediately.

Anonymous | 09/01/2023

I am writing to support the proposed change to the points given to candidates for blood type in lung allocation to provide more proportional access to transplant by blood type. This is an important positive action for Blood Type O candidates who have been negatively impacted by the changes implemented in March of this year. Thank you for the opportunity to comment.

University of Alabama at Birmingham Hospital | 09/01/2023

Responding on behalf of our lung leadership team:

The intent behind the implementation of the new CAS is to increase the number of lung transplants and improve disparities in allocating organs to candidates with biological disadvantages (height, high PRAs, pediatric age group etc.). It is clear from the 3-month post implementation data that blood group O listed candidates have to reach a higher level of medical urgency and are receiving fewer transplants in comparison to other blood groups. This likely will result in an increase in waitlist mortality for these patients given time.
In the previous allocation system (LAS) organs were offered to identical blood groups in the donor specific area (DSA) before compatible blood groups were eligible. Even in the LAS era several papers (1, 2) reported blood group O candidates have decreased transplantation rates, increased waitlist mortality and needing a comparatively higher LAS to receive a lung transplant compared to other blood groups.
With the CAS implementation, the organ allocation limitations imposed by the geographical area has been mostly eliminated resulting overall in a higher number of lung transplants nationally, though at a cost of increased travel distance. However, points assigned to specific blood groups based on statistical modeling in the current CAS have resulted in lower transplantation rates for blood group O candidates. Understandably, statistical modeling based on older datasets may not always be perfect in predicting an actual outcome. It is commendable that the OPTN has been able to identify this issue early and propose this corrective change to increase CAS points for blood group O candidates to make the allocation of organs more equitable.

We strongly support this proposed change to help increase organ access for Blood group O lung transplant candidates.

(1) Implications of blood group on lung transplantation rates: A propensity-matched registry analysis. (https://pubmed.ncbi.nlm.nih.gov/30366846/) Barac YD, Mulvihill MS, Cox ML, Bishawi M, Klapper J, Haney J, Daneshmand M, Hartwig MG.J Heart Lung Transplant. 2019 Jan;38(1):73-82. doi: 10.1016/j.healun.2018.09.013.
(2) Lung transplant waitlist outcomes among ABO blood groups vary based on disease severity. (https://pubmed.ncbi.nlm.nih.gov/36464610/)
Greissman S, Anderson M, Dimango A, Grewal H, Magda G, Robbins H, Shah L, Costa J, Stanifer B, D'-Ovidio F, Juarez ML, Lemaitre P, Sonett J, Arcasoy S, Benvenut o L. J Heart Lung Transplant. 2023 Apr;42(4):480-487. doi: 10.1016/j.healun.2022.10.024.

Anonymous | 09/01/2023

It appears that certain blood types are being adversely and disproportionally affected by the recent changes in allocation protocol.

Gift of Life Michigan | 09/01/2023

We appreciate the work of the Committee to refine the measures put in place to ensure fair access and distribution of donated lungs for transplantation. The Composite Allocation Score seems to be effective, and the observation of a possible disadvantage to patients in Blood Group O warrants swift action. We note the extreme pressure to maintain fairness in the system for something in short supply.

We further encourage ongoing evaluation of lungs offered and careful consideration for lungs sometimes appearing less than ideal. We hope the advent of machine preservation continues to repair and recondition lungs to a state of suitability so that more donated lungs can be used.

Ron Vogler | 08/31/2023

Since the proposed change would bring people with type O blood in equal standing it should be adopted. They are currently being rated unfairly within the current system.

Anonymous | 08/31/2023

I support the proposed change to the weighting system given to candidates for blood type in lung allocation to provide more proportional access to transplant by blood type. This is an vitally important action for Blood Type O candidates who have been negatively impacted by the changes implemented in March of this year. Thank you for the opportunity to share my opinion and swift action to implement the proposed change.

Anonymous | 08/31/2023

I strongly support the proposed changes to the points given to patients for blood type in lung allocation to provide more proportional access transplant by blood type. This is a vital action for blood type O patients who have been negatively impacted by the changes. Thank you and I hope for quick action to implement the changes.

Anonymous | 08/31/2023

We are writing to support the proposed change to the points given to candidates for blood type in lung allocation to provide more proportional access to transplant by blood type. This is an important positive action for Blood Type O candidates who have been negatively impacted by the changes implemented in March of this year. Thank you for the opportunity to comment and swift action to implement the proposed change.

Herb Baker | 08/30/2023

When the system was changed to provide an improved opportunity to receive a transplant, it appears that now we have created a new group who are not receiving equal treatment. Those with type O blood are now having to wait longer than previously. Since the original intent was to create equality, shouldn’t the new statistics be used to implement needed modifications. The sooner this is done then the less negative impact will be felt by those with O blood type. Action is needed now!!

Linda Baker | 08/30/2023

The proposed modification to provide improved equality among blood type recipients is a positive enhancement. Since the original intent of this new policy was to improve equal access to transplant organs, this change would hopefully help those with blood type O rather than decrease their access as it has done.
Immediate action is of the essence. Thank you.

Jenalee Coster | 08/29/2023

I support the corrective action by OPTN to mitigate the disparity in the CAS system that disadvantages recipients with an O blood type. There has been an increase in waitlist time for our O blood type recipients; however, I am concerned that the increase to 5 total points for the O blood type may then disadvantage our other recipients given that it is the total number of points for biological disadvantage; yet, others have mentioned that there is a significant change at a decimal point level between recipients. Thus, while this may effectively work in the short term, we may see a disadvantage to the A blood type in the long term. I do appreciate the committee for addressing this issue expeditiously; in the interim prior to exact policy change, there are recipients actively waiting and actively disadvantaged by the current system and I would support consideration of accepting of exception letters until policy goes into effect. Again, thank you for the tremendous effort you are placing into evaluating this disparity.

Anonymous | 08/29/2023

I am a candidate for a double lung transplant. My blood type is O-I was listed on June 9th. I have been closely following the length of the waiting list at a number of centers. It seems apparent that this is a statistical anomaly developing for the O blood types. I strongly support the adjustment to the model which would provide additional points in the CAS model for these blood types. In my case, this could be the difference in receiving a transplant while I am still within the window.

Thank you for the opportunity to comment. However, time is of the essence. Please take this action quickly.

Anonymous | 08/29/2023

I am happy to see such a swift response to a problem identified early in the CAS allocation system. However, looking at it from above, there many patients are waiting in the median and that do not have high CAS scores and these 5 points, 2.2382 points 0.3032 points, and 0 points is going to have a large impact on match runs, especially when every decimal place matters in distinguishing between the difference quartiles. I understand that the overall scale with shift with this “adjustment”.

Dawn Freiberger | 08/29/2023

I support this proposal and look forward to reviewing the new data once available to see if further modifications are needed.

Anonymous | 08/28/2023

Anything that can decrease any disadvantage for any particular group is welcome. I think your headed in right direction for all

Louisiana Organ Procurement Agency | 08/28/2023

I could see this one going either way. I'm not sure if this would favor one ABO vs another, but if leads to more Lungs being transplanted it should be better. Hopefully it leads to more Lungs being transplanted, and more lives being saved. In theory this should balance out all the ABO Lung recipients, and no blood type should be left at a disadvantage.

Tom Jarrett | 08/28/2023

As an O positive patient who is waiting for a transplant and getting sicker by the day it seems inherently unfair that we are the universal donors but being penalized as recipients

Nicholas Kolaitis | 08/25/2023

In some sense, I am very happy that UNOS is quick to rectify one of the inequities they have created with the CAS implementation. This being said, awarding a full 5 points for O recipients seems out of proportion to the other components of the score (which I also think need serious revision). My suspicion is that this change will essentially eliminate the intended goal to allow for the use of O organs in non-O recipients.

As noted in the CAS Score Summary (https://unos.org/news/lung-cas-score-summary/), the 95th percentile for medical urgency is only 2.410 points. As such, an A or an AB recipient will need to achieve a medical urgency somewhere between the 95th to 99th percentile to equal the 5 extra points allocated for O recipients.

I do agree that this change is more equitable than the current CAS system and support the change, however, I wonder if this will overcorrect the initial error.

Anonymous | 08/25/2023

excellent response to the problem!

University of Minnesota-M Health Fairview | 08/25/2023

The University of Minnesota Lung Transplant Program is strongly in favor of the committee's proposal to revise the blood type rating scale, thereby affording blood type O candidates the complete allocation of 5 points within the lung CAS framework. This targeted adjustment, designed to enhance the equitable allocation of lungs predicated on blood type, will likely establish a more balanced transplantation rate for blood type O recipients, aligning them with counterparts of differing blood types and mitigating the prospect of protracted waiting periods. Concurrently, we advocate for a judiciously timed interim evaluation of this recalibration, aimed at measuring its efficacy in rectifying the existent disparity.

chadi hage | 08/25/2023

I support this corrective action to mitigate the severe disparity that affected patient who are waitlisted with blood type O. However, I am concerned that while and after the backlog of blood type O clears and surviving candidates receive their transplants, candidates with other blood types will be subjected to similar disparity in access, unless the system is corrected again. Given that blood types A and O are the most prevalent, their rating scale might need to be adjusted concurrently taking into account the compatibility factor (O being a universal donor). The committee is encouraged to continue to monitor the outcomes in terms of access, cost, and outcomes and share the data with the community and the public in full transparency. We appreciate all the hard work, expertise and efforts of this committee.

Laura Green | 08/24/2023

The proposed policy change is a welcomed and much needed effort to correct the overestimation of blood type O transplant rates in the pre-implementation simulation of the continuous distribution model the SRTR determined had inadvertently “allowed for recipients to receive lungs from donors of any blood type, regardless of compatibility. In other words, the increase in blood type O transplants observed in the simulation modeling reflected blood type incompatible transplants that would not actually occur in practice.”
The implementation of this modeling appears to have unintentionally created a disparity in access to transplant for blood type O candidates. This is seen in the reported decline by 32 of blood type O lung transplants when comparing the 3 months pre-implementation to the 3 months post-implementation and when reviewing the reported data of an 18.8% decrease in blood type O donor lungs being distributed to blood type O recipients, recipients who are already limited by only being able to receive blood type O lungs. Additionally, the blood type subsection of the biological disadvantages score in the CAS model, allows for 5 points, of which 4.545 of those points are currently seemingly unattainable for any candidate, given exception requests for higher scores, even when requested for blood type O candidates, are denied, even after observing longer waiting periods and simultaneously having a higher medical urgency. I support and applaud the urgent efforts to adjust the score calculation for blood type O, to improve equitable distribution of lungs to those on the wait list with blood type O, and thereby contribute to improving their access to lung transplantation.

Elizabeth Lendermon | 08/24/2023

Thank you for addressing this issue as promptly as possible. In the interim prior to policy change, there are patients with blood type O and advanced disease who are disadvantaged and may die waiting for lung allografts. Please consider accepting exception letters for review for these patients now.

Cynthia Gries | 08/24/2023

Yes! This makes absolute sense. When creating the score our hope was to give the patients with biological disadvantages an advantage. As modeled currently, the O blood type gets a minimal advantage and no one is able to get the full 5 points. I agree with modifying this as you describe!