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MELD exception scores during NLRB transition

Proposal Overview

Status: Public Comment

Sponsoring Committee: Executive Committee

Strategic Goal 2: Provide equity in access to transplants

Read the full proposal (PDF; 1/2019)

Contact: Elizabeth Miller


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Executive Summary

Liver allocation currently uses donor service areas (DSAs) and OPTN regions as units of distribution. That will change when recently approved allocation changes are implemented (targeted for April 30, 2019). The National Liver Review Board (NLRB) was to be implemented on January 31, 2019, but that plan was delayed because unintended consequences were identified in the plan to base the model for end stage liver disease (MELD) exception scores on median MELD at transplant within 250 NM of the transplant hospital (MMaT/250). Because the MMaT/250 for transplant programs within the same DSA can vary, similarly situated candidates at different hospitals within a DSA can have different scores, and would consistently appear lower or higher than one another on every match run while allocation is still based on DSA and region. The OPTN is now soliciting comments on a policy change that would apply only with respect to the calculation of exception scores to address this issue. This transition policy would be in effect for a brief period after the public comment period (scheduled to end March 22, 2019) and before implementation of the revised allocation policy (targeted for April 30, 2019).

In an attempt to address this situation, the OPTN Executive Committee approved the OPTN Liver Committee’s proposed temporary solution: using the median MELD at transplant in the DSA (MMaT/DSA) instead of MMaT/250 during the period between implementation of the NLRB and implementation of liver allocation changes (hereafter, “transition period”). This transition period will be interim, and will expire upon the implementation of liver allocation changes (targeted for April 30, 2019). The goal of this approach is to better align the calculation of exception scores with the current allocation system during the transition period.

Feedback requested

The Committee requests feedback on the proposed temporary solution of using the MMaT/DSA instead of MMaT/250 during the transition period. In addition to feedback on the proposed solution, the Committee welcomes comment on the other options considered by the committee as well as whether to convert exception scores that were granted by Regional Review Boards (RRB) but will expire after the implementation of the new allocation system (see pages 5-6). The Executive Committee may reconsider these alternate solutions for this proposal.

Comments

Anonymous | 02/02/2019

If the National review board cannot be implemented on time it’s better to push everything back just a few months to get it right. The uncertainty is hard in patients and their doctors. Stick with the original plan of implementing the national review board then do the allocation change 90 days later as planned. Changing too much too much too soon make it more difficult to pinpoint a problem if one arises.

Anonymous | 02/04/2019

You use too many acronyms. You have MMaT which I discovered meant "Median MELD at transplant" Your acronyms have acronyms. Here I am, a general lay person who knows someone is going to become a living donor for a friend of hers and the process intrigued me enough to read about the statistics, etc and you use so many acronyms I don't have a clue what you are talking about. Aaannd there went my interest.....(Not really but for the vast majority that would be true.)

Michael Curry | 02/05/2019

We are supportive of the policy of the MLRB but the following are our concerns: The policy needs to have some further consideration into the timing of implementation of the MMaT. Due to the fact that patients can keep their MELD score until the next extension but then must have a MELD score equivalent to MMaT-3, it is possible that some patients who have been listed with MELD exception score and whose extension is due soon, could be disadvantaged as they may show up on match run lower than patients who have been listed for shorter period of time but have had an extension in their exception just prior to Jan 31. For example: a patient with a MELD extension on Jan 29 would increase to a score of 34 until April 29th, yet a patient who is already on 34 with a MELD extension after Jan 29 would drop to a MELD score equivalent to MMaT-3 which could be lower than 34. This is a disadvantage to the patient who is supposed to have a high priority.

Malay Shah | 02/07/2019

What's the point in moving forward with any proposal of any kind? The organizations and institutions that regulate and support transplant have proven themselves to be incapable of directing any meaningful, thoughtful and beneficial policy of any kind. Rather than focusing any efforts into improving organ donation and identifying real healthcare disparities, efforts have been taken to only propose and pass policy as dictated by HHS and litigation. Rather than asking for public comment to this proposal, I feel that at this point, it would be more prudent to ask administrators and lawyers what they most appropriate steps would be. Clearly, the advice of stakeholders and experts in the field are not valued and not accepted.

Region 7 | 02/08/2019

Region 7 vote-6 strongly support, 7 support, 2 abstained

Mariel Carr | 02/11/2019

In order to be transparent and avoid yet another pitfall, what exactly is the MMaT/DSA for each of the 52 liver donation service areas, and especially for the identified outliers' DSAs?

Kenneth Andreoni | 02/11/2019

My opposition to this suggestion is simply that patient's illness is more fairly based on LAB MELD, and not allocation MELD. It is impossible to foresee how using Allocation MELD instead of LAB MELD will harm acutely ill patients by giving less ill patients with exception points too much relative access to organs. We must be clear in separating LAB from ALLOCATION MELD when we discuss Mean MELD at Transplant issues.

Anonymous | 02/12/2019

the premise of the liver allocation change was to remove DSA as an element of allocation. As different centers have different practices (and different MELD at txp), it seems that exception points should be specific for the center and not the DSA centers. Each liver center should have their median MELD at txp be an internal standard for exception points.

Seth Karp | 02/15/2019

As we move to a national distribution system, MELD - 3 will lead to a patients with the same disease competing for the same liver at a different MELD scores depending solely on where they live. This move to a national system for MELD exceptions has not been adequately modeled and the impact on various communities has not been adequately addressed.

GIGI (GRACE ) GAGNE | 02/16/2019

My dear husband of 50 yrs, passed away while waiting for liver and kidney transplants, from the NASH. He was Denied his transplant at Mayo-Jacksonville, FL, due to being malnourished. He could not even tolerate supplements thru NJ tube. (He had lost approx 65 lbs from Apr -Dec 2018!) He was also on a transplant list at Mass Gen Hospital, Boston. Tho, MGH tried desperately to nourish him, he lost his battle on Dec 29th. I know of several other patients who also have been denied a liver transplant, due to being malnourished. I suggest, if nourishment is detrimental in the survival of liver and other transplants, Nourishment should become an important equation of the MELD Formula. How do I get involved in this endeavor? Gigi Gagne 603-881-7111

Region 1 | 02/18/2019

Region 1 vote -1 strongly support, 6 support, 2 abstained, 3 opposed, 1 strongly oppose