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URGENT CALL FOR COMMENTS ON NLRB PROPOSAL

PSC Partners supports the proposed National Liver Review Board (NLRB) policy change.

THE DEADLINE HAS PASSED TO COMMENT ABOUT NLRB PROPOSAL FOR PSC EXCEPTION POINTS IN MELD SCORE.

We had a unique opportunity to make our voices heard and bring about an important change.

Big Thank You To Our Community!

THANK YOU to everyone who added their voice in support of the proposed NLRB policy change. Our PSC community rose to the challenge with close to 180 people making sure their voices were heard loud and clear.

Click the link below to read the comments. 

Once on the site, click links on top left of page to Read the Proposal or View Comments. (It is too late to add a comment.)


Background on MELD & PELD Scores and PSC

Over and over, our community helplessly witnesses the tragic outcomes that can arise from the discrepancy existing between a PSCer’s MELD score and the severity of their illness. By the time PSC patients reach a high MELD score, they may be too sick to receive a transplant.

New Data: Recent statistics show that the dropout rate of PSC transplant candidates with a MELD or PELD score greater than 37 is substantially higher for PSC patients than for other listed liver patients (“dropout” refers to death or to being too sick to be transplanted). This data confirms what we as patients have long observed.

The National Liver Review Board (NLRB) is recommending a change in the policy for exception points regarding the frequency of hospital admission and the location of admission. We need as many PSC patients and caregivers as possible to write to the NLRB now voicing support.

For PSC exception points, currently: PSC patients receive exception points only after they are admitted to the ICU two or more times in the last three months for hemodynamic instability requiring vasopressors, in addition to other requirements which are not changing at this time.

Proposed policy change: PSC patients receive exception points only after they are admitted to the hospital two or more times within a one-year period for a documented blood stream infection or evidence of sepsis including hemodynamic instability requiring vasopressors.

The proposed definition includes details regarding sepsis, which is what causes the hemodynamic instability (low blood pressure). This is treated by vasopressors (medication to increase blood pressure).

Read the Public Comment Proposal: Updating National Liver Review Board Guidance and Policy Clarification from the OPTN Liver and Intestinal Organ Transplantation Committee

PSC Partners supports these proposed policy changes and submitted their comment to the NLRB.


Definition of Terms

Candidate: An individual on the organ transplant waiting list

Guidance Documents: Documents that provide more information to transplant programs and NLRB members to use when making decisions on exception request 

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

Standardized Exception: An exception with criteria outlined in policy that is automatically approved when submitted and is not reviewed by the NLRB

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

OPTN: Organ Procurement and Transplantation Network

Primary Sclerosing Cholangitis (PSC): A rare disease that causes scarring in the bile ducts

Secondary Sclerosing Cholangitis (SSC): A chronic disease similar to PSC caused by a known condition

Visit the UNOS/MELD/PELD page on our website for more information about the UNOS system and to calculate your MELD/PELD score. 

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