Comments

Hume-Lee Transplant Center | 03/18/2023

Support this policy change. MVT candidates are really the sickest of the sick and frankly wait too long.

Joshua Weiner | 03/17/2023

We strongly support this proposal for three major reasons. 1) Patients listed for multivisceral transplantation are often more ill than indicated by their MELD . 2) Patients listed for multivisceral transplantation are a more difficult match for organs, even based on higher MELD, because lack of abdominal domain significantly limits the size of acceptable organs. 3) Patients listed for multivisceral transplantation often have a narrow window for transplantation due to fast decline in health and frequent need to place on hold for line infections and other complications. Therefore, we support MMaT + 6 and the addition of 3 points every 90 days.

Luke Preczewski | 03/16/2023

This proposal is long overdue and does not go far enough. However, it is a step in the right direction and should be adopted and monitored. These patients are profoundly disadvantaged by current allocation, and this begins to the fix that. This will reduce the considerable mortality in these patients, and get closer to aligning the US with other MVT-performing systems in Europe and South America who give greater priority than this proposes. Given the small number of patients affected, this will be a life-saving game changer for them, while the impact on liver-alone patients will be so negligible as to be irrelevant. This should adopted, monitored, enhanced (if data show necessity), and expanded to pediatric patients.

UC San Diego Center for Transplantation | 03/15/2023

The UC San Diego Center for Transplantation appreciates the Liver and Intestinal Committee's efforts to address a critical issues for this very unique and limited but disproportionally impacted percentage of patients and supports the Guidance as written.

Society for Pediatric Liver Transplantation | 03/15/2023

The Society of Pediatric Liver Transplantation recognizes the importance of appropriate priority for adult multi-visceral candidates but requests that the Committee monitor for any impact of this policy on the outcomes of peds liver and liver-intestine candidates (waiting time, waitlist mortality, transplant rates – especially by region and age). We recognize that it will impact a small number of patients and that these are sick adults – but we also think it is important to follow carefully for any unintended impact on other children waiting for transplant – both liver and liver-intestine candidates.

Region 6 | 03/15/2023

0 strongly support, 9 support, 5 neutral/abstain, 0 oppose, 0 strongly oppose

During the discussion, several attendees supported a median MELD at transplant (MMaT) -3 so that liver alone candidates will not be disadvantaged. One went on to comment that if these candidates are getting MMaT +6 it is really about waiting time and not acuity. Two attendees supported the proposal but commented that there should be a cap on how many points these candidates can receive with a suggested cap of MELD 35. Two attendees were concerned that pediatric patients were not included in the presentation and commented that they should also be given consideration when proposing any changes to the guidance.  One attendee commented that graft loss and mortality are much higher in multivisceral candidates than in liver alone candidates, so this change would mean allocating high quality livers to candidates who have a higher mortality rate than liver alone candidates. 

Region 11 | 03/15/2023

4 strongly support, 11 support, 8 neutral/abstain, 0 oppose, 0 strongly oppose

A few members proposed that only one kidney from a donor should be allocated for a multivisceral transplant and the other one allocated to a kidney alone candidate. Several members commented that they approve of the policy as long as the data is reviewed annually and that the impact of the acuity circle allocation policy on multivisceral candidates needs to be addressed. One member stated that most mulitvisceral candidates are young and have enormous potential for long term survival after transplant. 

OPTN Pancreas Transplantation Committee | 03/15/2023

The Pancreas Committee thanks the OPTN Liver and Intestines Transplantation Committee for the opportunity to review their Create National Liver Review Board (NLRB) Guidance for Multi-Visceral Transplant (MVT) Candidates proposal. 

The Committee supports the proposal overall. The Committee voiced concern for program behavior and that an increase in points every 90 days may result in a patient waiting for their score to become higher. The Committee also inquired if there were regions where there were differences between the model for end-stage liver disease (MELD) and median MELD at transplant (MMAT) for transplant that could present a disadvantage for liver patients? The Committee acknowledged that the number for pancreas is so small that it is not believed that it should be a huge impact, however, it should be reviewed periodically in the case that the number increases in the future and needs to be addressed. 

Anonymous | 03/14/2023

Transplant should a time for hope and healing and has unfortunately been turned into a brutally hard reality for MVT patients while waiting for so many years. It is time for a change.

Anonymous | 03/14/2023

This is critical in supporting individuals needing multiple organ transplants.

Donor Network of Arizona | 03/14/2023

Donor Network of Arizona supports this proposal.

Tan Parker | 03/14/2023

Thank you for accepting public comment on a critical issue that has life-saving implications for patients in dire need of multi-organ transplants. This impacts more people than many realize. It's way past time that our nation aligns organ donation policies fairly to include proper weighting for those who have multiple failing organs. With medical advancements, we can modernize our national transplant system and save more precious lives. I strongly support supporting patients with multi-visceral transplant needs, creating a more efficient and equitable system that will increase access and create better outcomes for those who need these types of life-saving procedures.

Region 7 | 03/14/2023

0 strongly support, 10 support, 1 neutral/abstain, 3 oppose, 0 strongly oppose

Members commented that exception points should be capped and that the prioritization amount should be revisited to avoid a cost to patients that are not multivisceral candidates. Another member agrees with the proposed guidance to increase the opportunity for more severely ill patients to receive a multivisceral transplant. A member commented that the number of people on the waitlist has steadily decreased since the implementation of acuity circles and evidence that it is working. Increased multivisceral candidate mortality is an unfortunate unintended consequence for a relatively small group that has very specific and restrictive transplantation requirements. They support implementing this proposal with continuous review to ensure that it working to reduce MV waitlist time and removal due to death and that it does not have its own unintended consequences after implementation. Most important is to track the effect to the liver-alone candidates given that the needs of MV require complex circumstance with high quality organs for transplant. This does need to be closely watched if implemented, to track the consequences. It is a very small group, so the consequences may be minimal.

Region 1 | 03/14/2023

1 strongly support, 7 support, 2 neutral/abstain, 1 oppose, 1 strongly oppose

Region 1 generally supported this proposal . Many members commented that it is important to consider the poorer post-transplant survival of multivisceral candidates in comparison to the better post-transplant survival of liver alone candidates because transplant is not a zero sum game. A member also remarked that it’s important to consider the decreased survival of the single organ candidates who do not get a transplant when one multivisceral candidate is transplanted. 

American Society of Transplant Surgeons | 03/14/2023

ASTS agrees with the committee’s recommendation to allow for automatic exception points for adult MVT candidates and for them to be considered for an initial exception score equal to MMaT plus six with three additional MELD points every 90 days. We also agree that priority in allocation will remain with the liver alone candidates with lab MELD equal to the MVT candidates MELD exception points, thereby allocating to the patient with the higher lab MELD first when allocation MELD points are equivalent. We support the proposal that the center must provide the reason for the liver + intestine, or liver + intestine + other organs. However, it is important the request does include the specific indication for each additional organ requested. We do not see any reason to request more specific criteria for MVT exception beyond the requirement for liver-intestine transplantation with or without other abdominal organs. We agree with early and continual review of the outcome of this MVT exception point policy to ensure that severely ill liver-alone candidates are not put in undue jeopardy by the MVT exception point policy.

View attachment from American Society of Transplant Surgeons

American Society of Transplantation | 03/14/2023

The American Society of Transplantation (AST) offers the following comments for consideration in response to the public comment proposal, “National Liver Review Board (NLRB) Guidance for Multivisceral Transplant Candidates:”

• There is support for appropriately prioritizing multivisceral transplant candidates, acknowledging that donors are often difficult to find for these patients.
• The analysis supporting the initial Median MELD +6 adjustment appears sound; however, the rationale for the additional +3 points upon exception extension is not adequately justified. As increasing the MELD influences access for liver alone candidates, an unwarranted increase could be a concern for equity in allocation. Did the OPTN Liver and Intestinal Organ Transplantation Committee review data regarding the forecasted waiting list mortality for patients listed at MMaT+6 versus a lower threshold, such as MMaT of +5, 4, 3, especially with additional of the MELD elevator after 90 days? It was noted that MMaT of +6 would potentially prioritize MVT patients immediately in very high MMaT regions above a high MELD liver transplant alone patients (e.g., MMaT of 29+6=35). Further modeling might be necessary to assure comparative waitlist mortality between the two groups.
• The AST recommends liver programs must provide specific justification that addresses the need for a kidney when requesting an exception for multivisceral candidates including a kidney. Additionally, the guidelines should outline a mechanism by which a nephrologist from the OPTN Kidney Transplantation Committee can comment on the exception request and its medical appropriateness.

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

This proposal is not pertinent to ASHI or its members.

Peter Klamkin | 03/14/2023

A change is needed as my daughter has been a multi-visceral candidate for over four years with little sign of an encouraging prospect. The current system doesn't work for lower MELD score candidates like my daughter. I am amazed at comments by folks who say there's been some improvement, it means nothing when the candidate is your child and she's still waiting.

Region 8 | 03/14/2023

1 strongly support, 8 support, 8 neutral/abstain, 4 oppose, 0 strongly oppose

Region 8 mostly supports this proposal, but some members were in opposition. An attendee expressed concern for wasting resources in light of poor outcomes on multivisceral transplant (MVT) recipients. Another member questioned if this proposal will have a benefit. An attendee recommended the committee include guidance to ensure there is sufficient information, regarding why the kidney is needed, in the MVT. She also pointed out the NLRB needs to have access to renal expertise when evaluating exception requests for MVT, when a kidney will be involved in the MVT. An attendee requested as much guidance as possible in order to eliminate miscommunication or differences of opinion, regarding how to proceed, between the OPO and the transplant center. 

OPTN Transplant Coordinators Committee | 03/14/2023

The Transplant Coordinators Committee thanks the Liver and Intestine Committee for their work on this proposal. 

A member expressed support for the proposed MMaT+6 exception score with an increase of 3 points every 90 days. She noted that in southern California that would put candidates near a MELD of 40 where MMaTs are already high. 

Another member expressed support for the changes and commended the Liver Committee for continuing to refine the guidelines for NLRBs. She also appreciates the rule clarifications and applicability with the way MOT candidates are handled.

Stephanie Jira | 03/13/2023

I received my multi visceral transplant in April 2021. After over three years of being listed and with little time left. It took me being a couple weeks from death before my call came. Now I watch as my dear friends spend years on the list waiting and getting closer to death but not closer to transplant. It’s time that the system change to reflect the changes in health care. Please, don’t allow multi visceral patients continue to die as they wait on their match while being passed over for transplant because of the MELD scores.

OPTN Ad Hoc Multi-Organ Transplantation Committee | 03/11/2023

The OPTN Multi-Organ Transplantation Committee appreciates the work of the Liver and Intestines Committee in forming this guidance for MVT. We are supportive of this proposal and feel that it illustrates the need for the multi-organ transplantation committee when developing policies.

Region 9 | 03/09/2023

2 strongly support, 7 support, 6 neutral/abstain, 0 oppose, 0 strongly oppose

Region 9 supported this proposed guidance. Several members said that this is a reasonable proposal which should help a very small, very sick segment of patients. A member stated that the increased time to transplant and increasing mortality in the multivisceral wait list argue in favor of this guidance. Another member cautioned to be careful that the points are used to promote access to transplant and not just to utilize younger donors for multivisceral transplant. 

Region 5 | 03/03/2023

9 strongly support, 12 support, 8 neutral/abstain, 1 oppose, 0 strongly oppose

Region 5 supports the proposal. A member commented that there are probably only two or three multivisceral transplants in this region so this proposal will not greatly impact liver transplant. A member commented that it’s society will not oppose the proposal due to the compelling evidence that shows how MVT candidates are disadvantaged. A member suggested that the committee consider giving MVT candidates a MELD of 40.

Region 10 | 02/28/2023

5 strongly support, 6 support, 10 neutral/abstain, 0 oppose, 0 strongly oppose

Members in the region were supportive of the proposal. It was noted that this guidance is a good first step and the data needs to be reassessed regularly as to whether MVT patients should have more points. Another attendee noted that Region 10 has the most MVT programs in the nation and were included in the committee’s deliberations. The attendee added that although they believe MVT candidates deserve more priority, the proposal is sufficient. The committee should consider placing the MVT candidates at the top of the list, similar to kidney/pancreas allocation because it will be difficult to identify these candidates when they are mixed in with all other liver candidates.  

Region 3 | 02/24/2023

1 strongly support, 13 support, 2 neutral/abstain, 0 oppose, 0 strongly oppose

Region 3 supported this proposed guidance. During the discussion several attendees commented that this was long overdue and may not be enough to get access to transplant for this group. They went on to recommend that the committee monitor the impact to see if these candidates need even more priority. One attendee added that under the current system the multi-visceral candidates have a high rate of mortality on the waiting list and center cannot get them transplanted.  

Region 2 | 02/21/2023

5 strongly support, 12 support, 7 neutral/abstain, 0 oppose, 0 strongly oppose

The proposal was supported by members in the region. One attendee noted that it would be important to review data on the impact to adult candidates receiving the MVT organs and how it compares to different regions where the MVT programs are located. Additionally, it is not a fair comparison to compare MVT candidates to all liver candidates. It is important to understand how adults with high MELD scores will be affected. Another attendee noted that it seems to make sense to add points to MELD scores of older candidates. Typically, those candidates are very sick and would benefit from receiving an organ earlier. 

Region 4 | 02/21/2023

3 strongly support,12 support, 7 neutral/abstain, 0 oppose, 1 strongly oppose

Region 4 generally supported this proposal. One attendee was concerned about allocating more high-quality kidneys to multi-visceral candidates ahead of kidney alone candidates and commented that this needs to be monitored for patient and graft survival for multi-visceral recipients versus kidney alone recipients.

Miami Transplant Institute | 02/08/2023

Multivisceral patients have been excluded from the allocation algorithm and it has caused tremendous impact on the ability to transplant these patients . The impact on the liver list is dismal with less than 1%. We must change to a new system before the mortality increases even more . Many patients now have died or not even been listed because of the inability to receive an offer

Susan Klamkin | 01/25/2023

My daughter has been listed in Miami since April 2019 (1400 days) for a MVT. She was born with chronic intestinal pseudo obstruction. She’s been fed via G/GJ/J tubes and TPN throughout her life. She’s lost all her large and most of her small bowel, lost her pancreas due to pancreatitis (needing a pancreatectomy with auto islet transplant in 2008), trunkal vagotomy, multiple pulmonary embolisms, heart blood clots resulting in heart surgery, 50+ central lines resulting in severe, life threatening infections. She is now left with short gut, a need for a heart valve replacement due to a central line placed too low in her heart, running out of central line access. At that point she won’t have any nutrition. Explain to us why, why a 1400 day wait as of today, why there has never been a board for MVT’s, why you’re allowing my child to die. Who is playing God and deciding who lives and who dies? Why do livers get first dibs, meanwhile people who are gravely ill are not? This is utterly unconscionable! Please, please add a board for MVT and allow my child to live. Her life is filled with severe pain and multiple hospitalizations leaving her no sense of normalcy.

Holly McNeese | 01/25/2023

We want to plead on behalf of our dear family friend, who has been waiting 4+ years to receive a multivisceral transplant. I know she is one of many, many MVT candidates whose suffering is prolonged because the current ‘scoring’ process is broken. When a suitable donor becomes available, the NLRB essentially offers liver-only recipients first dibs, leaving those whose needs are greater to languish hopelessly. And as MVT candidates wait and wait, they often become so weak and sick that they are removed from the waitlist. It is a cruel and unfair process. We strongly request that organ procurement programs, in particular UNOS, revise the current, very flawed scoring method so that MVT candidates will receive increased access to suitable donors. Thank you.

Anonymous | 01/21/2023

We have a very good friend who needs a multivisceral transplant. She has been on the list for about four years. Our understanding is that the system really favors people who only need a liver. So as the years go by, her health continues to deteriorate and, as it stands today, she will probably die because she is unlikely to receive the transplant that she needs. From where we sit, it is obvious that the system that determines the allocation of organs is flawed. I can't say if there are financial interests that influence the outcomes but I can say that it is tilted away from those who need multiple organs. This is sad, and it needs to be addressed. I hope for serious and thoughtful consideration in the matter so that it can be rectified.

Albert Terranova | 01/20/2023

I was originally on the liver Transplant list. My portal vein thrombosis prevents me from having a TIPS procedure, they attempted it four times. After two years ,i was refered to Miami Transplant Institute for a multiviceral work up. I was finally listed almost one year ago now. My portal vein continues to worsen and I require a paracentisis twice weekly to relieve the ascites .they drain about five to six litres each time. This has been my life now for well over a year. My mobility is effected, I rarely sleep and I have lost most of my muscle mass . I remain at a meld score of 29 and feel it should be alot higher. I don't know how much longer I can endure this. I beg UNOS to not look at patients like me as just a number. I pray daily for anyone waiting on Transplant of any kind.