Frequently Asked Questions Document for Adult Patients Waiting for a Liver or Liver/Small Bowel Transplant
This document has been developed by Trillium Gift of Life Network (the Network) with the help of your transplant doctors. The Network is the agency responsible for managing waitlists and allocating organs in Ontario. The Network's goals have always been to:
- Reduce deaths on the wait list;
- Provide more equitable access to liver transplantation across the province; and
- Ensure optimal use of organs.
Starting on November 13th, 2012, the process for allocating livers for transplantation changed in order to better achieve these goals. The questions and answers below will help you understand how the liver allocation works in Ontario and how the changes made may affect patients in need of a liver transplant.
Can you explain the changes made?
The first change is that the system for prioritizing candidates for liver transplant now uses a different measure of medical urgency. Previously, patients were prioritized according to their medical status, based on blood tests, severity of liver disease and total length of time on the waitlist. The Sodium Model for End- Stage Liver Disease (Na MELD) will now be used to identify medically urgent patients in greatest need of liver transplant.
The second change has to do with the number of waitlists in Ontario. Until 2012, there were two liver waitlists, with a London and Toronto listing for their respective transplant programs. Beginning November 13, 2012, these two lists were replaced by a single Ontario waitlist. Donor livers are allocated using this waitlist based on medical urgency, to ensure that the patient in greatest need of a liver transplant is prioritized, regardless of where they live in the province.
What is Na MELD and how will it be used to allocate donor livers?
Na MELD is a numerical scale ranging from 11 (less ill) to 40 (gravely ill) that is used to assess medical urgency for patients requiring a liver transplant. The score, which is updated for each waiting patient every month, through laboratory tests, indicates how urgently a patient requires a liver transplant if a suitable donor liver becomes available within a three month period. Na MELD uses results from routine laboratory tests including:
- Bilirubin – Measures how effectively the liver excretes bile);
- INR(prothrombin time) – Measure s the liver's ability to make blood clotting factors;
- Creatinine – Measures kidney function (impaired kidney function is associated with liver disease); and
- Serum Sodium Concentration – Measures the sodium to water ratio which is a marker of the severity of liver disease.
What do these changes mean for me?
Patients are required to have current test results for the Na MELD scoring system. You will be required to go to the laboratory for regular testing – at a minimum of every three months. This will ensure that the most current Na MELD score is in the system when a donor liver becomes available for transplant.
If you are planning a holiday, you will need to make arrangements through your transplant coordinator to have your testing conducted before you leave.
If you are currently waiting for a liver transplant, you will be required to do blood testing every month to ensure your Na MELD score is current. Your Na MELD scores may increase or decrease depending on the severity of your condition. Your most current score is required to ensure that you are appropriately placed on the waitlist for liver transplant.
What other medical conditions are considered in my scoring for liver transplant?
If your transplant physician believes that your Na MELD score does not reflect your medical need for a transplant, they can seek a higher Na MELD score than the one obtained from your current laboratory test results. Your transplant physician would have to explain your circumstances to a Special Case Committee for approval. Patients are discussed on a case-by-case basis prior to reassigning a Na MELD score.
Are there any other considerations aside from Na MELD score?
All patients (infants, children and adults) who have acute liver failure and a life expectancy of less than 7 days without transplant will be assigned a unique and distinct medically urgent status. These patients are not affected by Na MELD. These patients will be prioritized for transplantation.
What happens if two or more patients have the same Na MELD scores?
In the event that there are 2 or more patients with the same Na MELD score and blood type, the patient who has been waiting the longest for liver transplant, will be prioritized. For example, if three patients with equal Na MELD scores have been waiting for 100, 40 and 30 days respectively, the patient who has been waiting 100 days will be allocated the liver for transplantation.
Furthermore, in cases where there is less than a 4 point difference between patients, geography will be considered to prioritize the patient in closer vicinity to the liver.
Does this new system disadvantage patients already on the waitlist?
No. If your health deteriorates as indicated by your Na MELD score, you will be prioritized for transplantation. If your condition is stable, someone in greater need may receive a transplant before you. The new allocation rules have been created to provide greater consistency and clarity regarding medical urgency and to ensure that all patients are considered for transplantation with equity and equality in processes.
Why were these changes necessary?
These changes were made to ensure that the patient in greatest need of a transplant in Ontario is prioritized for liver transplantation.
The Na MELD system is based on our research into best practices for liver allocation and is modelled after a similar system that has been successfully used in the United States of America (USA) to determine medical urgency for transplant.
The changes have been made jointly between TGLN and the Ontario liver transplantation community, including your doctors. TGLN is the Ontario agency that oversees all aspects of organ and tissue donation and transplantation. TGLN's mission is to save and enhance more lives through the gift of organ and tissue donation and transplantation in Ontario. As part of its mandate, TGLN is required to establish and manage waiting lists for organ transplant and a system to fairly allocate available organs.
In 2010, recommendations were made by the Office of the Auditor General of Ontario and the Organ and Tissue Transplantation Wait Times Expert Panel to review the liver allocation process for the purposes of ensuring that there is a single provincial list for all patients waiting for transplant and that the highest priority patient in the province receives the first organ available. These recommendations have been made to ensure that there is equity in the allocation process.
What if I have further questions regarding organ allocation, Na MELD or liver transplantation?
If you have any further questions or concerns, you should contact your transplant coordinator and/or transplant physician for further information.