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National Liver Review Board (NLRB) Guidance for Multivisceral Transplant Candidates

eye iconAt a glance

Current policy

When a liver transplant program believes that a candidate’s calculated model for end-stage liver disease (MELD) or pediatric end-stage liver disease (PELD) score does not accurately reflect their medical urgency for transplant, they can submit a request for a MELD or PELD exception score. The National Liver Review Board (NLRB) reviews requests from transplant programs for these exception scores. The NLRB uses policy and guidance documents to decide whether to approve or deny exception score requests. This proposal seeks to create NLRB guidance for multivisceral transplant (MVT) candidates so they can access higher MELD scores. MVT candidates have experienced reduced access to transplant and an increased risk of being removed from the waitlist for death or too sick for transplant since the implementation of the acuity circles policy. Guidance specific to MVT will allow a clear pathway for transplant programs to submit exception requests to the NLRB for MVT candidates, thereby increasing access to transplant and reducing waitlist mortality.

Supporting media

Presentation

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Proposed guidance

  • Adult candidates listed for multivisceral transplant should be considered for an initial MELD exception score equal to Median MELD at Transplant (MMaT) +6
  • Adult candidates listed for multivisceral transplant should be considered for an additional 3 point increase every 90 days they remain on the waitlist
  • Transplant programs must indicate the reason the candidate requires a liver transplant when submitting the exception request

Anticipated impact

  • What it's expected to do
    • Increase access to suitable donors for MVT candidates on the waiting list
    • Reduce waiting list mortality for listed MVT candidates
  • What it won't do
    • Multivisceral transplant candidates will not receive an increased exception score if the reason they require a liver transplant is solely for immunological purposes

Terms to know

  • Guidance Documents: Documents that provide more information to transplant programs and NLRB members to use when making decisions on exception requests
  • Model for End-Stage Liver Disease (MELD): The scoring system used in allocation of livers to candidates who are at least 12 years old
  • Pediatric End-Stage Liver Disease (PELD): The scoring system used in allocation of livers to candidates who are under 12 years old
  • National Liver Review Board (NLRB): A review board of members drawn from a nationwide pool of liver transplant physicians and surgeons, who review exception requests from transplant programs for candidates whose automatically calculated model for end-stage liver disease (MELD) score or pediatric end-stage liver disease (PELD) score does not accurately reflect the candidate’s medical urgency for transplant
  • Multivisceral transplant candidate:  Candidate who needs a liver-intestine-pancreas, liver-intestine, liver-intestine-kidney or liver-intestine-pancreas-kidney from the same donor
  • Acuity circles policy:  A policy for allocating deceased donor livers using a series of concentric circles originating from the donor hospital

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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.

Susan Klamkin | 01/25/2023

My daughter has been listed in Miami for a MVT since April 2019 (1400 days). She was born with intestinal pseudo obstruction and fed through G/GJ/J tubes and TPN. She has had 50+ Central lines, multiple serious infections. a line that damaged her tricuspid valve, multiple intestinal surgeries, loss of her pancreas due to pancreatitis, trunkal vagotomy, many blood clots, heart surgery to remove blood clots. She is now short-gut, in need of a new heart valve and running out of locations to place central lines. At that point will have no access for nutrition. She lives with severe pain, not allowing for any kind of “normal” life. 36 years, how can this be fair? Please explain how liver transplants have first dibs? Why has there not been a board for intestine/MVT? It seems to us that someone is playing God, deciding who lives and who dies. This is thoroughly unconscionable. Please, please change the rules and give my daughter the chance to live. After all, isn’t this what you're all about?

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.