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PKD Foundation Shares Position on Proposed Changes to Kidney Allocation Policy

The United Network for Organ Sharing (UNOS) recently issued proposed changes to the deceased donor kidney allocation policy. These changes are seeking to improve outcomes for kidney transplant recipients and increase utilization of available kidneys. The PKD Foundation's Scientific Advisory Committee (SAC) reviewed the proposal and developed the position that is detailed below. The proposal is open for public comment through Dec. 14, 2012.

If you wish to comment, please follow these steps:

1. Visit the Public Comment section of the OPTN website
2. Click on Proposal 1.
3. Then click GO in the Submit Comment column and follow the instructions on that page.

The PKD Foundation's Position on the UNOS Proposal to Amend Deceased Donor Kidney Allocation Policy:

Advisors to the Polycystic Kidney Disease (PKD) Foundation have reviewed the changes to the kidney allocation policy proposed by the Kidney Transplant Committee of UNOS. The PKD Foundation lauds the efforts by the Kidney Transplant Committee to improve utilization of this limited, life-saving resource. The new allocation policy continues to give priority to pediatric patients, which would include most Autosomal Recessive (AR) PKD patients. In addition, the increase in renal transplants for young recipients may benefit young adult ARPKD patients and a small percentage of Autosomal Dominant (AD) PKD patients who develop renal failure at a young age.

The PKD Foundation does have some concern about the anticipated shift in the highest quality organs away from older recipients. This shift is proposed in an effort to lessen the frequency of patient death with a kidney transplant that would be anticipated to have significant potential years of function. However, patients with ADPKD develop renal failure due to a genetic mutation which causes progressive destruction of native kidney function over a period of decades and typically do not develop end stage renal disease until the 6th decade of life. ADPKD patients are generally healthy otherwise, and might be anticipated to have post-transplant patient survival similar to younger patients with renal failure due to other diseases. Thus the anticipated shift in the highest quality organs away from older recipients may adversely affect ADPKD patients disproportionately. One way to address this would be to expand the diagnoses that are included in the Estimated Post Transplant Survival algorithm; as currently proposed, only diabetes is included in this algorithm.

It is hoped that the anticipated increases in life-years post transplant, average lifespan post transplant, and median graft-years of life will ultimately compensate for the anticipated decrease in the number of PKD patients transplanted each year under the proposed scheme. However, there is no certainty that this will occur. Thus the PKDF thinks it is important for UNOS to prospectively track relevant statistics regarding how organ allocation is affected if the proposed allocation policy is implemented. Thus the transplant community can assess whether the effects on organ allocation predicted by KPSAM (Kidney Pancreas Simulated Allocation Model) are accurate and how different recipient groups are affected.