This information page has been created to help answer questions and clarify processes for Manitobans who are currently receiving dialysis and who are also on the kidney transplant wait list.
How did Transplant Manitoba establish the rules that decide who will receive a transplant when a donor kidney is available?
As there are over 150 patients currently waiting for a kidney transplant in Manitoba, it is important that this limited and precious gift from a donor be given to patients in a fair and transparent manner– this is referred to as the Kidney Allocation Rules.
Transplant Manitoba participated in a National Consensus Forum with other Canadian transplant programs, the Kidney Foundation of Canada, as well as legal and ethical experts to develop a clear set of principles that guide decision-making for kidney allocation to patients on the wait list.
Transplant Manitoba also held focus groups with dialysis patients awaiting a kidney transplant to better understand their perceptions of the rules and what they thought would be a fair system for kidney allocation in Manitoba.
This is what we learned from the focus groups:
- Patients have little knowledge about the allocation rules for donor kidneys as well as the criteria for being eligible to be on the wait list.
- Patients expect the wait list and allocation rules to be transparent and fair.
- Patients agree with the move to rules that ranked patients on predetermined objective criteria.
- Patients expect that the allocation rules to be free of unjust discrimination.
- Patients want the allocation rules to be available to all patients.
- Patients want the allocation rules to be explained to them in plain language
Based on what we learned at the National Consensus Forum and from our patients we have developed a clear set of kidney allocation rules for all Manitoba patients on the wait list.
What principles were used to develop the kidney allocation rules?
As you can see below, key principles include medical need, utility and justice. These principles can compete with one another, so it is essential that the allocation rules strike a balance. For example, medical need may give more priority to a patient with a short wait time ahead of a patient with a longer wait time.
Underpinning this balance is a transparent system, developed with input from key constituents including patients, and accountability to ensure the process is monitored and audited regularly.
Dialysis therapy alone is not available or is insufficient to maintain health or life.
Optimal post-transplant outcomes must be considered to improve patient and transplant results and reduce the need for a second kidney transplant.
Ensuring everyone who is on the wait list for a transplant must have a fair chance to be transplanted.
What specific criteria are used to define medical need, utility and justice?
The following are the criteria used for:
- Inadequate Dialysis: These patients can no longer be adequately dialyzed because peritoneal and hemo dialysis are no longer possible or effective – a transplant becomes a life-saving therapy.
- Children: Medical evidence demonstrates that children require a kidney transplant to grow, develop and learn properly. As such, they are given a high priority for receiving a kidney transplant.
- Tissue (HLA) Matching: The better the tissue match between the donor and recipient, the better the chance that the kidney transplant will last longer.
- Young kidney to young recipient: A kidney from a young donor can last for many years; therefore giving a young kidney to a young recipient maximizes the use of the donor’s gift.
- Wait-time on Dialysis: To ensure fair access patients have increasing priority based on their wait time from the date they started dialysis treatment.
- Sensitization Level: Patients are “sensitized” if their immune system has made antibodies against potential donor kidneys in which case they are not compatible with the donor. As you become more and more sensitized (from pregnancy or blood transfusions) the compatible donor pool becomes smaller so it will take longer to find a donor match. To ensure fair access, when a compatible donor is available priority will be given. However, it is important to remember that at a very high level of sensitization (80% or more) it may take years to find a compatible donor.
- Prior Living Kidney Donor: While a very rare occurrence (less than 0.5% of all living donors), these individuals may at some point require a kidney transplant. Given that they themselves have contributed to the pool of kidney donors it is deemed fair that they should get some priority should they need a kidney transplant themselves.
How are medical need, utility and justice criteria combined to create allocation rules and rank patients on the wait list?
Taking into consideration the principles of medical need, utility and justice, we have developed the following ranking system to assign priority for patients awaiting a kidney transplant:
Overriding Priority – these patients will be given the next available compatible donor kidney. Up to 15% of all kidneys are allocated for these types of patients on the wait list.
High Priority – these patients will be given the next available compatible donor kidney as long as there are no other patients on the wait list who have “Overriding Priority” for transplant ahead of them. Up to 10% of all kidneys are allocated for these types of patients on the wait list.
Normal Priority – these patients will be given the next available compatible donor kidney as long as there are no other patients on the wait-list who have “Overriding or High Priority”. The majority (at least 75%) of all donor kidneys are allocated to patients who fall within this category.To ensure an objective and fair approach for the “Normal Priority” group, a priority score is used. The patient with the highest number of points will have top priority for the donor kidney. The priority score is based on the total of the points accumulated for wait time on dialysis (1 point per year), the level of tissue (HLA) match (to a maximum of 3 points), and the level of sensitization (to a maximum of 2.4 points).
To optimally use the limited number of donor kidneys a “young donor to a young recipient” rule is applied. This minimizes the need for a younger recipient to be re-transplanted in their lifetime and therefore ensures fair access for all patients on the wait list – more people on the wait list will be seeking just their first transplant. It is important that the young donor rule not disadvantage older patients – older recipients maintain “Equal Access” to a kidney transplant. Therefore Transplant Manitoba has introduced two major safeguards:
- The definition of a young donor is restricted to individuals under the age of 25;
- A kidney from an older donor (60 years of age or more) is only offered to a recipient 55 years of age or older.
No Priority – these patients are not yet on dialysis but have significant kidney disease that at some point in time is likely to lead to the need for dialysis. These patients may be transplanted with a donor kidney preemptively only if there are no other compatible patients with a higher level of priority – this rarely occurs.
How does Transplant Manitoba ensure accountability and transparency to the public?
Responding to the feedback that Transplant Manitoba received from our dialysis patient focus groups, we formed the Kidney Review Committee to hold the transplant programs accountable and to ensure transparency for our patients.
The mandate of the Kidney Review Committee is to:
- Conduct audits of all donor kidney allocations to ensure adherence to the rules.
- Review yearly the kidney allocation rules to ensure that the rules are actually achieving their goals of a fair and objective system of allocation.
- Initiate and oversee a formal process for allocation rule modification that is transparent and committed to broad patient consultation.
The membership of the Kidney Review Committee is comprised of the following individuals:
- WRHA Ethics Medical Officer – Chair
- Transplant Manitoba – Program Manager – Vice Chair
- Patient Representative (Dialysis Patient on the Wait List)
- Kidney Foundation of Canada (Manitoba Branch) Representative
- HSC Patient Representative Officer
- Social Work Representative
- Manitoba Renal Program Representative
- Transplant Manitoba Program Representative
The medical directors of the transplant programs report all kidney allocation activity to the Committee.