1. Living Donor Kidney Transplant April 15, 2012 Margaret Leid Transplant Community Liaison Penn Transplant Institute margaret.leid@uphs.upenn.edu

2. 2 Greater Philadelphia Region Kidney Transplant Centers Deceased & Living Donor Transplants: Volume* * Scientific Registry of Transplant Patients, January 2012.Time period 7/1/2010 – 6/30/2011. www.srtr.org

3. 3 Penn Transplant Institute 3-Year Patient Survival Penn Transplant Institute Best 3-Year Graft Survival in Region Penn Transplant Institute Highest Volume Center in the Region SRTR Data 1/2012. For patients transplanted between 1/1/2006 and 6/30/2008

4. 4 Penn Transplant Institute – Kidney Transplant Program EXPERIENCE First kidney transplant 1966 VOLUME Highest volume in Philadelphia Region OUTCOMES Best 3-year graft survival rates in Philadelphia region* LIVING DONOR TEAM One of country’s most experienced teams. Most living kidney donors in region* GUEST HOUSE For transplant patients and their families traveling more than 50 miles EVAL CLINIC YARDLEY, PA Reduces travel time by car from NYC by one hour each direction ACCESSIBLE By Train Amtrak, NJ Transit By Bus Greyhound Megabus, Bolt Bus LOCATION Historic University of Pennsylvania Campus located in shopping/dining University City District *Based on January 2012 SRTR data

5. 5 Clyde F. Barker Penn Transplant House NEW GUESTHOUSE Built in June 2011 For Penn transplant patients and families traveling more than 50 miles SUPPORT THROUGH ALL PHASES OF CARE Evaluation Surgery Follow-up CONVENIENT LOCATION Five blocks from Penn On Septa bus line INSURANCE COVERAGE Considered part of travel expense for transplant evaluation and follow-up. Check with insurance company KIDNEY TRANSPLANT SUPPORT GROUPS Second Sunday of each month. Pre and post transplant patients and their families Light refreshments provided LONG TERM STAYS Beautiful common kitchen area with storage for each family. Common living and dining area for connection with other transplant patients and families. For Reservations and Additional Information: 215-662-4540

6. 6 Questions to Run On  Why does a kidney from a living donor sometimes last twice as long as a kidney from a deceased donor?  How do I know it is safe for my friends or family to donate a kidney to me?  How does someone interested in learning about donating a kidney get information before committing to the surgery?  What are the health requirements for someone thinking about donating a kidney?

7. 7 How Do Kidneys Become Available? DONOR HOSPITAL Living Donors Do Not Need to Be in Your Family OR Living Kidney Donors 4 to 6 Year Wait Deceased Donor Kidneys UNITED NETWORK OF ORGAN SHARING (UNOS)

8. 8 (UNITED NETWORK FOR ORGAN SHARING) Government contract to oversee the national system for U.S. organ procurement an transplantation One Central Database ACUTE CARE HOSPITALS Work with OPOs to coordinate the organ donation process Transplant Waiting List: Updated Every Time A Family Says Yes to Donation and Every Time a Patient is Added to the List Where do deceased donor kidneys come from? TRANSPLANT CENTERS List patients for transplant Penn is 1 of 256 transplant centers in the U.S. Donor Data Sent to UNOS Family Says Yes to Donation Recipient data sent to UNOS computer system

9. 9 112,637 OPTN U.S.TRANSPLANT WAITING LIST ALL ORGANS 90,621 KIDNEY = 80% WAITING GIFT OF LIFE DONOR PROGRAM DONATION YEAR 2009-2010 780 KIDNEY TRANSPLANTS OPTN DATA 1/20/2012 http://optn.transplant.hrsa.gov Our Region 5,335 AVERAGE WAITING TIME 3–5 YEARS (BASED ON BLOOD TYPE)

10. 10 91,425 people in U.S. waiting for kidney An average of 16,000 people receive kidney transplants per year Gallup Poll of Americans 93% Would Donate Their Loved One’s Organs If They Knew Their Wishes Ahead of Time Donor Designation Pennsylvania 45.2% Philadelphia County 30%

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12. 12 How Many of Your Patients Understand: Dialysis shortens life expectancy compared to transplant. The less time on dialysis before transplant, the better the kidney will function and the longer it will last.

13. 13 Optimum Strategies to Minimize Time On Dialysis Living Donors Consider Kidneys from Expanded Criteria Donors (ECD)

14. 14 Summary of Options  Own healthy kidneys  Living donor kidney  Standard criteria kidney  Expanded criteria kidney  Dialysis Most life years Fewest life years

15. 15 Why does a kidney from a living donor sometimes last twice as long as a kidney from a deceased donor?  Kidney not impacted by brain death.  The time the kidney is without blood flow is dramatically reduced.  Living kidney donors are healthier than the average person.  Only very healthy people are accepted at Penn to be living kidney donors.  First living donor transplant at Penn more than 40 years ago. Donor and recipient still doing well.

16. 16 Benefits of Living Kidney Donor Transplantation  Kidney lasts longer – improved quality  Avoid dialysis completely or shorten time on dialysis Before complications develop  Improved patient survival  Avoid 4-6 year wait for deceased donor kidney  Time of transplant operation is made at convenient time for donor and recipient  Minimal delayed organ function  Medicines post-transplant may be less aggressive Who can be a living donor?  Family member  Friend  Stranger

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18. 18 Living Donor Evaluation Process Extensive and Thorough DONOR EDUCATION SESSION MULTI- DISCIPLINARY EVALUATION NEPHROLOGY EVALUATION SURGICAL EVALUATION DONOR SELECTION COMMITTEE REVIEW

19. 19 Interested in Living Kidney Donation? Steps for Listed Patients Complete all testing and attain status 1 on the transplant waiting list. Share with your family and friends your experiences with chronic kidney disease and dialysis. 1.Invite interested potential donors to complete the Living Kidney Donation Referral Form. 2.Encourage friends and family members to support organ donation awareness initiatives through Gift of Life. Steps for Potential Donors 1.Submit request for private preliminary consultation with the Living Kidney Donor team. 2.Learn about the living kidney donor process through the evaluation process 3.Talk with the team about concerns and questions. 4.Decide if this is the right option for you at this time.

20. 20 What Are the Top 5 Criteria to be a Living Kidney Donor? Free from diabetes, cancer, kidney disease, heart disease and substantial high blood pressure. Physically fit - Body Mass Index (BMI) <30 Between 21 and 60 years old Stability in life maintenance issues. Good general health

21. 21 Paired Kidney Exchange

22. 22 How to Find a Living Donor Share your story about dialysis and needing a kidney transplant. Learn about living donor kidney transplant - Volunteer organizations - Religious groups - Friends and family: consider a spokesperson Penn Transplant Website http://www.pennmedicine.org/transplant/ American Society of Transplant Surgeons (ASTS) http://www.a-s-t.org/ National Kidney Foundation - http://www.kidney.org/ American Society of Transplantation http://www.asts.org/ResearchEducation/PatientEducation.aspx

23. 23 How does someone interested in learning about donating a kidney get information before committing to the surgery?

24. 24 Patient Education Lobby Days One to One Sessions Intro to Kidney Transplant Multiple Listing Dialysis Unit Staff Inservices/Luncheons Transplant Eval Process Organ Donation Protocols Understanding SRTR Data PENN KIDNEY TRANSPLANT : PATIENT & STAFF EDUCATION SERVICES

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