Highly Sensitized Patient Registry: Update and Successes

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Highly Sensitized Patient Registry: Update and Successes Dr. Olwyn Johnston Medical Director Kidney and Pancreas Transplant Program Vancouver General Hospital

Conflict of Interest Transplant Nephrologist CBS National Committees

Objectives 1. National Highly Sensitized Registry from the patient perspective: a. What does highly sensitized mean? b. How does it effect deceased donor transplant waiting list? Deceased kidney transplant wait list BC transplant activity c. What are the options available for highly sensitized patients? 2. Describe the benefits of the National Highly Sensitized Registry

A. What does highly sensitized mean? One way our body protects itself from infection is the ability to recognize and destroy foreign cells. When the blood meets a foreign cell, it produces an antibody to fight the invader. Exposure to "non-self human leukocyte antigens (HLAs) results from: Blood transfusions A previous transplant Pregnancy. The mother is exposed to the father's antigens, which are expressed in the cells of the developing baby. Rejection risk rises dramatically for those with a high exposure to HLAs.

Panel Reactive Antibody (PRA) Immunological lab test routinely performed on wait-listed patients cpra score (%): the proportion of the donor population to which the recipient will react via pre-existing HLA antibodies. Each population has a different demographic of HLA antigens. For HSP purposes we define Highly Sensitized as cpra 95% (i.e. the recipient will have a positive crossmatch to 95% of potential donors)

B. How does it effect the deceased donor transplant waiting list? In general 25% of active Waiting List patients are highly sensitized. In the absence of National Registry, <1% highly sensitized patients transplanted annually.

Deceased Donor Transplantation How many patients are on the waiting list? Among patients on the waiting list, how many are Highly Sensitized?

BC Waiting List Data Oct 4 th 2016 Kidney O A B AB Wait list n= 510 225 171 96 18 Wait list active n= 227 102 69 46 10 Wait list hold n= 283 123 102 50 8

BC Waiting List Data Oct 4 th 2016 Kidney O A B AB Wait list n= 510 225 171 96 18 Wait list active n= 227 (n=76; 33%) 102 (n=38; 37%) 69 (n=22; 31%) 46 (n=12; 26%) 10 (n=4; 40%) Wait list hold n= 283 123 102 50 8 () indicate HSP patients

BC Kidney Transplant Activity Jan 1-Dec 31 2015 Transplant recipient type Total in BC Recipients of deceased donor kidneys 164* (101) Recipients of DCD kidneys 48** (27) Recipients of donor kidneys >60 32 (25) HSP recipients of deceased donor 13 (8%) Recipients of living donor kidneys 110 (104) Recipients of direct living donors 94 (79) Recipients of indirect living donors 16 (25) HSP recipient of living donor 1 # (0.9%) includes 3 liver/kidney Txs; **includes 1 liver/kidney Txs; # To Aug 2016+PRA not available on all

BC Kidney Transplant Activity Jan 1 Sep 1 2016 Transplant recipient type Total in BC Recipients of deceased donor kidneys 119 (164) Recipients of DCD kidneys 27 (48) Recipients of donor kidneys >60 20 (32) HSP recipient of deceased donor 10 (8.5%) Recipients of living donor kidneys 71 (110) Recipients of direct living donors 56 (94) Recipients of indirect living donor 15 (16) HSP recipient of living donor 3 # (4.2%) # To Aug 2016+PRA not available on all

Waiting Time Over Time by Blood Type Median Time from dialysis start to Tx (mths) 100.0 90.0 80.0 70.0 60.0 50.0 40.0 30.0 20.0 10.0 0.0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 A AB B O Year

Waiting Time by Blood Type 2014/2015 Median Time from dialysis start to Tx (mths) 90.0 80.0 70.0 60.0 50.0 40.0 30.0 20.0 10.0 0.0 32 16 73 52 2014 2015 A AB B O Year

Median Waiting Time for 1 st Deceased Donor Kidney Transplant is Prolonged if Sensitized Mean Time from dialysis start to Tx (mths) 90 80 70 60 50 40 30 20 10 0 43 53 46 87 2014 2015 Non-HSP HSP Year

Median Waiting Time for HSP patients by Blood Type Mean Time from dialysis start to Tx (mths) 140 120 100 80 60 40 20 0 Non-HSP HSP O A B AB 200 180 160 140 120 100 80 60 40 20 0 Non-HSP HSP O A B AB 2014 2015

C. What are the options available for highly sensitized patients? Highly Sensitized Patient Living Donor Deceased Donor Wait-List Direct Living Donor Transplant Kidney Paired Program Provincial National Highly Sensitized Patient Registry (Desenitization)

C. What are the options available for highly sensitized patients? Highly Sensitized Patient Living Donor Deceased Donor Wait- List Direct Living Donor Transplant Kidney Paired Program Provincial National Highly Sensitized Patient Registry (Desenitization)

NATIONAL HIGHLY SENSITIZED PATIENT REGISTRY

Evolution Province Active date Province Active date Manitoba Dec 2013 Ontario May 2014 Saskatchewan Dec 2013 BC June 2014 Alberta Feb 2014 Quebec Oct 27 2014 Atlantic March 2014 Equity Region Threshold + Threshold - Alberta 2-2 Atlantic 2-2 BC 2-2 Manitoba 1-1 Ontario 11-11 Quebec 7-7 Saskatchewan 1-1

National HSP registry inclusion criteria cpra 95% Active in a Provincial Kidney Transplant Wait List ESRD on dialysis (no pre-emptive wait-listing)

National HSP Activity Number of Transplants 120 100 80 60 40 20 2013 2014 2015 2016 to Sep 16 0 63 120 75 0 35 49 28 0 28 71 47 0 National Intraprovincial Interprovincial Total n=258 (to Sep 16 2016) Total n=112 Total n=146

BC HSP Activity Number of Transplants 12 10 8 6 4 2 2013 2014 2015 2016 to Sep 16 0 0 4 12 8 0 2 2 4 0 2 10 4 BC Intraprovincial Interprovincial Total n=24 (to Sep 19 2016) Total n=8 Total n=16

2. Advantages far outweigh the disadvantages of HSP Disadvantages Advantages

Summary HSP makes up 25-33% active wait-list Prolonged provincial waiting time Disadvantaged group National Highly Sensitized Registry had given hope <1% HSP transplanted/y prior to 2014 >8% HSP transplanted now

Acknowledgements BC Kidney Days (BCPRA) BC Transplant (Yvonne Sun) Canadian Blood Services Teresa Atkinson

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