ONLINE PETITION IS LEADING TO CHANGE
Important Information
Many patients on the liver transplant disease suffering from Primary Sclerosing Cholangitis (PSC) or Primary Billiary Cirrhosis (PBC) are often much sicker than their Median End-Stage Liver Disease (MELD) scores indicate. Since these are progressive autoimmune diseases, patients suffer for much longer before they are able to be transplanted. The MELD score determines a patient's priority on the wait list. With recent liver allocation changes made by the United Network of Organ Sharing (UNOS) to make regions of the country less competitive for organs, this puts even more emphasis on MELD score to determine who gets offered a liver. Even though they may have jaundice, muscle mass wasting, extreme fatigue, uncontrollable itching, fluid in the stomach or swollen veins in the esophagus, waiting longer until their score rises puts them at higher risk for developing life threatening complications.
Out of desperation to save her husband's life before he developed cancer or sepsis, Lezlee created an online petition five weeks before his transplant. The petition was to UNOS asking for "exception points" on MELD scores for PSC and PBC transplant patients. The sudden amount of signatures and public comments on their website got the immediate attention of UNOS. In December 2020, an important article based on this petition was featured in the AJT Report (American Journal of Transplantation).
