1. Bringing Others A Second Chance: The Pennsylvania Perspective presented by Serving western PennsylvaniaServing eastern Pennsylvania

2.  2 of 59 federally designated organ procurement organizations (OPOs)  Among most established in country, helping more than half million people through donation and transplantation  Not-for-profit agencies  All hospitals in Pennsylvania  19 organ transplant hospitals Who Are We?

3. What Do We Do?  Donor family support  Public and professional education  Donor identification and coordination  Donor management and recovery  Organ and corneal placement

4. At A Glimpse  More than 87,000 people are awaiting organ transplants; thousands more in need of tissue and corneal transplants  4,000 people are awaiting organ transplant through the Pennsylvania programs  Every 12 minutes, someone is added to the organ transplant waiting list

5. Pennsylvania-based OPOs 2000 Activity Population =15.6 Million 298 30.4/45 154 27.5/37.9 Total Donors = 452 Donors per million = 25.4 Kidneys Tx per million = 41.5 Philadelphia - Gift of Life Pittsburgh - CORE

6. U.S. Organ Procurement &Transplantation Structure 59Organ Procurement Organizations (OPO)59Organ Procurement Organizations (OPO) –non-profit, federally designated, report to HCFA 272 Medical Institutions w/Txp Programs272 Medical Institutions w/Txp Programs United Network for Organ Sharing (UNOS)United Network for Organ Sharing (UNOS) 2001 U.S. Donation & Transplantation Data:2001 U.S. Donation & Transplantation Data: –deceased organ donors – 6,081 –living organ donors – 6,499 –U.S. transplants performed - 22,854

7. What UNOS Does Facilitates organ matching –Manages Waiting List - establishes candidate wait list criteria –Matches donated organs to patients via 24- hour Organ Center/computer Establishes allocation policies Establishes criteria for transplant centers Maintains data on all donors & Txs. Supports OPOs by educating national healthcare associations & societies

8. UNOS Regional Map

9.  Physicians and nurses won’t save me.  I don’t want my body mutilated.  My family will have to pay for donation.  I won’t be able to have an open casket.  My religion doesn’t support donation.  I’m too old/sick to donate.  Only the wealthy receive transplants.  I came into this world with my organs, I’m leaving with them!  Donation and transplantation are for others to worry about; not my family Myths & Misconceptions

10. United States Patient Waiting List May 2004 52,772 Kidney 17,520 Liver 4,163 Heart 3,799 Lung 2,520 Kidney/Pancreas 1,311 Pancreas 301 Pancreas Islet Cell 209 Heart/Lung 193 Intestine 87,000 Total Patients Waiting Source: UNOS

11. National Data Waiting List Vs. Transplant Recipients 14,734 18,648 33,014 86,851 Source: Based on OPTN data. Waiting list based on registrations

12. W aiting List Vs. Transplant Recipients 14,734 18,648 33,014 86,851 Source: Based on OPTN data. Waiting list based on registrations 4461 Nationally GLDP Region

13. National Deaths Waiting for a Transplant 2003 Source: Based on OPTN data as of April 9, 2004

14. National Waiting List Demographics Children <18 3% Elderly (65+)11% Females42% Ethnic Minorities34% Source: Based on OPTN data.

15. U.S. Waiting List By Age Source: Based on OPTN data.

16. National Median Time to Transplant How long is the wait? Source: Based on OPTN data.

17. U.S. Waiting List By Organ 1993-2003 Source: Based on OPTN data. Number of registrations.

18. U.S. Waiting List Kidney and Liver 1993-2003 Source: Based on OPTN data. Number of registrations.

19. National Trends in Organ Donation Deceased Organ Donors 6,455 Living 6,814 2003 2003 Living vs. Deceased Organ Donors 1992 - 2003 Source: Based on OPTN data as of April 9, 2004. Waiting List Deaths 6,355

20. The Aging Organ Donor Population Source: Based on OPTN data. In 2003 approximately 14% of deceased donors were < 18 years old

21. Pennsylvania Residents Awaiting Organ Transplantation April 2004 All patients registered on the UNOS waiting list who reside in PA, regardless of the transplant center location where listed (e.g. DE, NJ, MD, FL, etc.). All patients registered on the UNOS waiting list who reside in PA, regardless of the transplant center location where listed (e.g. DE, NJ, MD, FL, etc.). 4,608 TOTAL PATIENTS WAITING Approximately 3,137 (68%) of All Pennsylvania Residents Listed for Transplant are Waiting at Gift of Life Donor Program Centers. 2,634 Kidney 2,634 Kidney 1,093 Liver 1,093 Liver 217 Heart 217 Heart 304 Lung 304 Lung 12 Heart/Lung 12 Heart/Lung 200 Pancreas 200 Pancreas 133 KP 133 KP 15 Intestine 15 Intestine Source: Based on OPTN data as of April 2, 2004

22. Gift of Life Donor Program Organ Donations Coordinated in PA Hospitals

23. Gift of Life Donor Program Organ Donation and Transplant Activity 2003 Summary 1,526 PA residents received lifesaving organ transplants; 703 (46%) of these transplants occurred in GLDP centers 404 PA residents became organ donors; 269 (67%) PA residents were organ donors in the GLDP region 293 individuals became organ donors in PA hospitals representing 85% of GLDP donors 4,608 PA residents are currently awaiting transplantation; 3,137 (68%) are waiting at GLDP centers Source: Based on OPTN & GLDP data.

24. Gift of Life Donor Program Patients Who Died Waiting For A Transplant 2003 HEART17 LIVER85 LUNG40 HEART-LUNG 1 PANCREAS 3 PANCREAS 3 KIDNEY 153 KIDNEY/PANC 7 TOTAL 306 Source: Based on OPTN data. Registrations on UNet system

25. Gift of Life Donor Program Waiting List vs. Patients Transplanted Waiting list consists of patient registrations. Transplants occurred in the GLDP area. 4461

26. Gift of Life Donor Program Total Transplants Coordinated 1994 - 2003

27. Gift of Life Donor Program Organ Donor Experience 1994 – 2003 In the first quarter of 2004 there were 455 organ referrals (a 13% increase over the same period last year) resulting in 110 organ donors, ( a 25% increase over the same period last year).

28. Gift of Life Donor Program Organ Donor Experience 1994 – 2003 Thanks to your support in Q1 2004 there were 110 organ donors including 18 NHBD cases.

29. Gift of Life Donor Program Organ Donor Experience 1994 – 2004* * As of 4/30/04. Annualized projection to exceed 400 Total Organ Donors.

30. 2003 Gift of Life Donor Program Organ Donors By Race 2003 HISPANIC n = 24 (7%) CAUCASIAN n = 254 (74%) AFRICAN AMERICAN n = 62 (18%) n = 62 (18%) ASIAN/INDIAN n = 4 (1%) N= 344

31. Gift of Life Donor Program Organ Donors By Age 2003 N= 344 0-5 9 (3%) 16-45 135 (39%) 6-15 13 (4%) 71+ 28 (8%) 46-60 114 (33%) 61-70 45 (13%)

32. Gift of Life Donor Program Organ Donors By Age 2003 Age Ranges N=344

33. Gift of Life Donor Program Number of Organs Coordinated 1974-2003 Total Organs Coordinated = 20,300 47 123 140 169 179 218 216 253 272 301 332 446 551536 601 557 718 837 800 804 778 1013 1178 1283 1268 1353 1251 1257 1457 Kidney = 12,005 Kidney = 12,005 Liver = 3,674 Liver = 3,674 Lung = 992 Lung = 992 Heart/Lung = 147 Heart/Lung = 147 Pancreas = 855 Pancreas = 855 Heart = 2,607 Heart = 2,607 Small Bowel = 20 Small Bowel = 20 1362 2003

34. Gift of Life Donor Program Tissue Donors* PA Act 102 Routine Referral *Some patients may donate multiple tissues for transplantation

35. Tissue Donors CORNEA 729 INTEGUMENTARY 30 MUSCULOSKELETAL 470 HEART VALVES 196 SAPHENOUS VEINS 110 OTHER 253 Gift of Life Donor Program Region Tissue Donation 2003

36. Donor Family Support  Framed remembrance  Donor Family Booklet  Gift of Life Medal  Gravesite Marker  Donor Family Recognition Ceremonies  Workshops and Conferences

37. Donor Family Communication  Family will receive letter from OPO explaining how loved one helped others through donation  Letter contains only basic information about recipients (age, marital status, hobbies, time on waiting list)  Donor families and recipients may communicate anonymously through OPO  OPO will arrange direct contact if family and recipient mutually agree

38. The Opportunity  42 percent of Pennsylvania drivers have placed the designation on the license  Percentage of registrants by county:  Centre (52.08%)  Chester (51.23%)  Warren (49.66%)  Cumberland (48.23%)  Erie (47.93%)  Bucks (47.45%)  York (47.25%)  Fayette (30.78%)  Philadelphia (29.23%)

39.  16-20 year olds are the largest segment placing the designation on the license  Designation rates plummet from an average high of 47.3% of females ages 31-40 to less than 17% for individuals 75 and older  Men are less likely to be registered as donors, but most apt to die in situations in which they can be donors The Opportunity

40.  Increase awareness and understanding  Emphasize that donation is life  Stress need to place designation on license/state identification card; sign donor card; share your wishes with family