The Transplant Waiting List and Organ Allocation Process

Presentation Objectives:
Gain knowledge of state, regional, and national statistics related to the transplant waiting list and transplantation.
Develop an understanding of the complexities surrounding being on the transplant waiting list and the medical reasons why a patient is added to the transplant waiting list.
Hear and understand the emotional and physical constraints of being on a transplant waiting list, waiting for the call, and being given a second chance at life.

Waiting List Data and Statistics
UNOS: United Network for Organ Sharing
OPTN: Organ Procurement and Transplantation Network
Source: UNOS/OTPD.net, 4/5/13

“The Gap”
*Data based on snapshot of the UNOS, OPTN waiting list and transplants on the last day of each year.

Waiting Lists
National
Regional
Local
Center

U.S. Waiting List Data
and Statistics
Source: UNOS/OTPD.net, 4/5/13

Regional Waiting List Data
and Statistics
Source: UNOS/OTPD.net, 4/5/13

Regional Waiting List Data
and Statistics
Source: UNOS/OTPD.net, 4/5/13

WI Waiting List Data
and Statistics
Source: UNOS/OTPD.net, 4/5/13

MI Waiting List Data
and Statistics
Source: UNOS/OTPD.net, 4/5/13

IL Waiting List Data and Statistics
Source: UNOS/OTPD.net, 4/5/13

How long does the typical waitlisted patient wait for a transplant?
Source: UNOS/OTPD.net, 4/5/13

UW OTD’s Laura Van Drese:
Her Dad’s Story

UW Average Waiting Times
Deceased Donor Kidney Transplants
Wait Time by Blood Type
(Includes patients transplanted between 7/1/2010 - 6/30/2012)
ABO Average days
A 315
AB 286
B 684
O 811

Necessary Steps to Getting on the Center Waiting List
Your physician must give you a referral
Contact a transplant hospital
Schedule an appointment for an evaluation and find out if you are a good candidate for transplant
If the hospital's transplant team determines that you are a good transplant candidate, they will add you to the national waiting list
Source: UNOS.org/TransplantLiving.org, 4/5/13

Evaluation
Schedule Evaluation Appointment
Surgeon
Social Work
Certified Dietician
Financial Counselor
Pre-Transplant Coordinator
Further Testing
Chest X-ray
Blood Work
Other

Standard Evaluation Testing
Colonoscopy age >50
Mammogram and Pap Smear Annually
PSA age>50
Chest X-ray
Dental Clearance
Cardiac Testing
Vascular Testing

Approval
Multi-Disciplinary Committee Review
Significant Coronary Artery Disease
Significant Vascular Disease
Malignancy
Non-Compliance
Substance Abuse (Active)
Poor Social/Financial Support
Insurance Approval

Two Types of Transplantation
Deceased Donor: UNOS Waiting list, UWHC Waiting List
Live Donor: can be related or non-related
related by blood or marriage
non-related directed donation
humanitarian non-directed donor donation
National Kidney Paired Exchange Program

Waiting: Complexities
and Constraints
Medical Preparation
stay healthy
keep your appts
Practical Preparation
stay organized
phone/email tree
pack your bags
dependant care
transportation plan
Educational Preparation
learn, read, find a support group
Financial Preparation
create financial plan
talk to your family
POA
Spiritual Preparation
seek spiritual help or counseling.
Receiving “the call”
ALWAYS answer your phone
have directions to transplant center ready

“I was at the top of the liver waiting list, too sick to be home with my family. While at the hospital, my doctor said, ‘you have to eat’, but I couldn’t keep anything down, so they had to put a feeding tube in. Try taking twenty pills a day with a feeding tube down your throat. It was awful.” Lee Belmas, Liver Recipient
“My original diagnosis was Type 1 Diabetes. I just assumed I would die at a young age. After my transplant, I felt like the windows of my house blew wide open. I saw brighter colors, a sense of hope, light, and excitement.” Nancy Garde, Kidney/Pancreas Recipient
Personal Constraints:
Physical and Emotional

Allocation: Matching Donor Organs With Transplant Candidates
Source: UNOS.org/TransplantLiving.org, 4/5/13

“Match Run”
Factors affecting ranking may include:
tissue match
blood type
length of time on the waiting list
immune status - sensitization
donor organ quality
distance between the potential recipient and the donor
degree of medical urgency (for heart, liver, lung and intestines)
Source: UNOS.org/TransplantLiving.org, 4/5/13

Kidney Donor Profile Index (KDPI)
KDPI Variables
Donor age
Height
Weight
Ethnicity
History of Hypertension
History of Diabetes
Cause of Death
Serum Creatinine
HCV Status
DCD Status
KDPI values now displayed with all
organ offers in DonorNet®

Current system does not include measure of potential longevity with transplant
Longevity matching for some candidates could reduce the need for repeat transplants
Inclusion of Longevity Matching

Four medical factors used to calculate Estimated Post Transplant Survival (EPTS)
Age
History of diabetes
Length of time on dialysis
History of a prior transplant
Inclusion of Longevity Matching

Candidates with CPRA >=98% face immense biological barriers
Current policy only prioritizes sensitized candidates at the local level.
Proposed policy would give following priority
To participate in Regional/National sharing, review & approval of unacceptable antigens will be required
Proposed Classifications:
Very Highly Sensitized

New categories for highly sensitized candidates

Current policy prioritizes donors younger than 35 to candidates listed prior to 18th birthday
Proposed policy would
Prioritize donors with KDPI scores <35%
Eliminate pediatric categories for non 0-ABDR KPDI >85%
Provides comparable level of access while streamlining allocation system
Modified Classification: Pediatric

Continued priority pediatric candidates
(now based on KDPI)

KDPI >85% kidneys would be allocated to a combined local and regional list
Would promote broader sharing of kidneys at higher risk of discard
DSAs with longer waiting times are more likely to utilize these kidneys than DSAs with shorter waiting times
Modified Classification:
Local + Regional for High KDPI Kidneys

Proposed Regional Sharing

Current payback policy was evaluated and found to be
Administratively challenging
Unfair in that it affected all candidates in an OPO even if only one center was responsible for accruing debt
Ineffective in improving outcomes of recipients
Kidney paybacks would no longer be permitted.
All payback credits and debts would be eliminated upon the implementation of the revised kidney allocation system.
Removed Classification:
Kidney Paybacks

PRIORITY WITHIN CLASSIFICATIONS

Candidates are rank-ordered according to points within each classification.
Proposed Changes to Point System

Proposed Point Changes: Sensitization
Current policy: 4 points for CPRA>=80%. No points for moderately sensitized candidates. Proposed policy: sliding scale starting at CPRA>=20%

Current policy begins waiting time points for adults at registration with:
GFR<=20 ml/min
Dialysis time
Proposed policy would also award waiting time points for dialysis time prior to registration
Better recognizes time spent with ESRD as the basis for priority
Pre-emptive listing would still be advantageous for 0-ABDR mismatch offers
Proposed Point Changes: Waiting Time

SIMULATED POLICY RESULTS

Scientific Registry of Transplant Recipients (SRTR) simulates proposed policy changes
Kidney-Pancreas Simulated Allocation Model (KPSAM)
50+ KPSAM runs conducted throughout policy development
4 KPSAM runs presented here for comparison
Evaluating Potential Policy Changes

New system forecasted to result in:
8,380 additional life years gained annually
Improved access for moderately and very highly sensitized candidates
Improved access for ethnic minority candidates
Comparable levels of kidney transplants at regional/national levels
Preview of Expected Outcomes

KPSAM results by candidate age

KPSAM results by ethnicity

KPSAM results by CPRA

KPSAM results by CPRA (95-100%)

New system forecasted to result in:
8,380 additional life years gained annually
Improved access for moderately and very highly sensitized candidates
Improved access for ethnic minority candidates
Comparable levels of kidney transplants at regional/national levels
Summary

Submit comments
online:
optn.transplant.hrsa.gov
Access webinar schedules
Download educational materials
Participate in Policy Development
Public
comment period ends December 14

John J. Friedewald, MD
Committee Chair
Richard N. Formica, Jr, MD
Committee Vice Chair
Ciara J. Samana, MSPH
UNOS Committee Liaison
[email protected]
804-782-4073
Committee Leadership and Support

UW OTD Services
“Connect to Purpose Letter”