Guess what?
UNOS has a proposal that will make exception points on MELD scores for PSC transplant patients less restrictive!
Our petition led to over 9000 signatures, hundreds of petition comments, and dozens of comments on the United Network of Organ Sharing (UNOS) public comment website last Fall. Well, this has led to research and proposed policy changes. But we need to respond! The public comment section is now open through March 23rd, 2021.
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Here is the exact proposal:
OPTN Liver and Intestinal Organ Transplantation Committee: Updating NLRB Guidance for Candidates with Primary Sclerosing Cholangitis (PSC) and Secondary Sclerosing Cholangitis (SSC)
Summary
The OPTN Liver and Intestinal Organ Transplantation Committee (the Liver Committee) is recommending changes to the guidance used to evaluation MELD exception requests for candidates with primary sclerosing cholangitis (PSC). The changes are intended to be less restrictive than current guidance to allow more candidates with PSC to receive a MELD exception score.
Current guidance
Current guidance states that most candidates with PSC do not require a MELD exception but certain candidates with PSC who meet specific criteria should be considered for an exception. In order to be considered for an exception, guidance recommends that PSC candidates be admitted to the intensive care unit (ICU) two or more times over a three month period for hemodynamic instability requiring vasopressors and must have cirrhosis. In addition, the candidate must have one of the following:
� Biliary tract structure that is not responsive to treatment by interventional radiology or therapeutic endoscopy
� Highly-resistant infectious organism
Proposed changes to guidance documents
The Committee is proposing guidance be less restrictive to allow more candidates with PSC to receive an exception by updating the language to recommend candidates be admitted to the hospital two or more times within a one year period instead of recommending candidates be admitted to the ICU two or more times over a three month period. The proposed update also states that candidates must be admitted to the hospital with:
� Documented blood stream infection, or
� Evidence of sepsis including hemodynamic instability requiring vasopressors
These changes make the guidance less restrictive and allow more candidates with PSC to receive a MELD exception request.
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Change is incremental. This is an amazing first step. According to the chief hepotologist at Mayo Clinic, this will help PSC patients tremendously because the previous rules were way too restrictive for patients to receive exception points on their MELD scores.
Please read the proposal and submit your feedback so this can be voted on an passed.
I would ask that Primary Billiary Cirrhosis (PBC) be included as well. THANK YOU!!! This will help thousands of people living with PSC who are in need of a transplant.
- Lezlee and Capt. Rob
To learn more about us, please register on our own website www.organtransplants.info