Bringing Others A Second Chance:

The Pennsylvania Perspective

presented by

Serving western Pennsylvania Serving eastern Pennsylvania

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?Who Are We?

What Do We Do?What Do We Do?Donor family supportDonor family support

Public and professional educationPublic and professional education

Donor identification and coordinationDonor identification and coordination

Donor management and recoveryDonor management and recovery

Organ and corneal placementOrgan and corneal placement

At A GlimpseAt A GlimpseMore than More than 87,00087,000 people are awaiting people are awaiting organ transplants; thousands more in organ transplants; thousands more in need of tissue and corneal transplantsneed of tissue and corneal transplants

4,0004,000 people are awaiting organ people are awaiting organ transplant through the Pennsylvania transplant through the Pennsylvania programsprograms

Every Every 12 minutes12 minutes, someone is added to , someone is added to the organ transplant waiting listthe organ transplant waiting list

U.S. Organ Procurement U.S. Organ Procurement &Transplantation Structure &Transplantation Structure

• 5959 Organ Procurement Organizations (OPO)Organ Procurement Organizations (OPO)– non-profit, federally designated, report to HCFAnon-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 – 6,081deceased organ donors – 6,081– living organ donors – 6,499living organ donors – 6,499– U.S. transplants performed - 22,854U.S. transplants performed - 22,854

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

UNOS Regional Map

Physicians and nurses won’t save me.Physicians and nurses won’t save me.

I don’t want my body mutilated.I don’t want my body mutilated.

My family will have to pay for My family will have to pay for donation.donation.

I won’t be able to have an open I won’t be able to have an open casket.casket.

My religion doesn’t support donation.My religion doesn’t support donation.

I’m too old/sick to donate.I’m too old/sick to donate.

Only the wealthy receive transplants.Only the wealthy receive transplants.

I came into this world with my organs, I came into this world with my organs, I’m leaving with them!I’m leaving with them!

Donation and transplantation are for Donation and transplantation are for others to worry about; not my familyothers to worry about; not my family

Myths & MisconceptionsMyths & Misconceptions

United StatesUnited StatesPatient Waiting ListPatient Waiting List

May 2004May 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

National DataWaiting List Vs. Transplant Recipients

10,000

20,000

30,000

40,000

50,000

60,000

70,000

80,000

90,000

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

WAITING TRANSPLANTED

14,73418,648

33,014

86,851

Source: Based on OPTN data. Waiting list based on registrations

       

Waiting List Vs. Transplant Recipients

10,000

20,000

30,000

40,000

50,000

60,000

70,000

80,000

90,000

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

WAITING TRANSPLANTED

14,734 18,648

33,014

86,851

Source: Based on OPTN data. Waiting list based on registrations

       

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003TRANSPLANTED WAITING

4461

NationallyNationally

GLDP Region

National Deaths Waiting for a Transplant

2003

Kidney 3,413Liver 1,703Heart 506Lung 443Intestine 47Pancreas 32Total 6,355

Source: Based on OPTN data as of April 9, 2004

National Waiting ListDemographics

Children <18 3%

Elderly (65+) 11%

Females 42%

Ethnic Minorities 34%Source: Based on OPTN data.

0

5,000

10,000

15,000

20,000

25,000

30,000

35,000

40,000

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

<18 65+ 18-34 35-49 50-64

U.S. Waiting ListBy Age

Source: Based on OPTN data.

National Median Time to Transplant How long is the wait?

230

1068

796

491

1121

0

200

400

600

800

1000

1200

Heart Lung Liver K-P Kidney

Source: Based on OPTN data.

U.S. Waiting List By Organ 1993-2003

0

1000

2000

3000

4000

5000

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Nu

mb

er o

f R

egis

trat

ion

s

Heart Lung Pancreas Heart-Lung Kidney-Pancreas

Source: Based on OPTN data . Number of registrations.

U.S. Waiting List Kidney and Liver

1993-2003

Source: Based on OPTN data . Number of registrations.

0

10,000

20,000

30,000

40,000

50,000

60,000

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Nu

mb

er o

f R

egis

trat

ion

s

Kidney Liver

National Trends in Organ DonationNational Trends in Organ Donation

Deceased Deceased Organ DonorsOrgan Donors

6,4556,455

Living Living

Organ DonorsOrgan Donors6,8146,814

20032003

Living vs. Deceased Organ DonorsLiving vs. Deceased Organ Donors

1992 - 20031992 - 2003

6,814

4,557

4,052

3,7813,488

3,1022,905

6,618

2,572

5,001

5,873

6,560

6,455

5,794 5,824

6,1876,080

4,520

4,8615,099

5,362 5,416 5,478

5,985

2,500

3,000

3,500

4,000

4,500

5,000

5,500

6,000

6,500

7,000

7,500

1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Living Donors Deceased Donors

Source: Based on OPTN data as of April 9, 2004.

Waiting List Waiting List DeathsDeaths

6,3556,355

The Aging Organ Donor Population

0%

5%

10%

15%

20%

25%

30%

35%

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

18-34 35-49 50-64 65+

Source: Based on OPTN data.

In 2003 approximately 14% of deceased donors were < 18 years old

Pennsylvania Residents Awaiting Pennsylvania Residents Awaiting Organ Transplantation Organ Transplantation

AprilApril 2004 2004

All patients registered on theAll patients registered on theUNOS waiting list who reside in UNOS waiting list who reside in PA, regardless of the transplant PA, regardless of the transplant center location where listed (e.g. center location where listed (e.g. DE, NJ, MD, FL, etc.).DE, NJ, MD, FL, etc.).

4,608 TOTAL PATIENTS WAITING4,608 TOTAL PATIENTS WAITINGApproximately 3,137 (68%) of All Pennsylvania Residents Approximately 3,137 (68%) of All Pennsylvania Residents

Listed for Transplant are Waiting at Gift of Life Donor Listed for Transplant are Waiting at Gift of Life Donor Program Centers.Program Centers.

2,634 Kidney2,634 Kidney 1,093 Liver1,093 Liver 217 Heart217 Heart 304 Lung304 Lung 12 Heart/Lung12 Heart/Lung 200 Pancreas200 Pancreas 133 KP133 KP 15 Intestine15 Intestine

Source: Based on OPTN data as of April 2 , 2004

174190

217

251 250282

243267

292 293

0

50

100

150

200

250

300

1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Organ Donors in PA Hospitals

Gift of Life Donor ProgramGift of Life Donor ProgramOrgan Donations Coordinated in PA HospitalsOrgan Donations Coordinated in PA Hospitals

Gift of Life Donor ProgramOrgan 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.

Gift of Life Donor Program Patients Who Died Waiting For A Transplant

2003HEARTHEART 1717

LIVERLIVER 8585

LUNGLUNG 4040

HEART-LUNGHEART-LUNG 1 1

PANCREAS 3PANCREAS 3

KIDNEYKIDNEY 153 153

KIDNEY/PANC 7KIDNEY/PANC 7

TOTALTOTAL 306 306Source: Based on OPTN data . Registrations on UNet system Source: Based on OPTN data . Registrations on UNet system

Gift of Life Donor ProgramWaiting List vs. Patients Transplanted

10641081

946878981964

924793 982

649 638

4325

3881

2419

1258 1643 1885 21112749 3101 3357

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003TRANSPLANTED WAITING

Waiting list consists of patient registrations. Transplants occurred in the GLDP area.

4461

 

Gift of Life Donor ProgramGift of Life Donor ProgramTotal Transplants CoordinatedTotal Transplants Coordinated

1994 - 20031994 - 2003

12381306

11121050

118611301133

1049

938

729

600

800

1000

1200

1400

1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Gift of Life Donor ProgramGift of Life Donor ProgramOrgan Donor ExperienceOrgan Donor Experience

1994 – 20031994 – 2003

208 222262

291 298331

298315

354 344

050

100150200250300350400

1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Total Donors (n=2,923)

In the first quarter of 2004 there were 455 organ referrals (a 13% increase over the same period 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).last year) resulting in 110 organ donors, ( a 25% increase over the same period last year).

Gift of Life Donor ProgramGift of Life Donor ProgramOrgan Donor ExperienceOrgan Donor Experience

1994 – 20031994 – 2003

208 222262

291 298331

298315

354 344

0 2

5136322324251412

050

100150200250300350400

1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

Total Donors (n=2,923) NHBDs (n=219)

Thanks to your support in Q1 2004 there were 110 organ donors including 18 NHBD cases.Thanks to your support in Q1 2004 there were 110 organ donors including 18 NHBD cases.

Gift of Life Donor ProgramGift of Life Donor ProgramOrgan Donor ExperienceOrgan Donor Experience

1994 – 2004*1994 – 2004*

208 222262

291 298331

298315

354 344

140

0 22012 14 25 24 23 32 36 51

0

50

100

150

200

250

300

350

400

1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004

Total Donors (n=3,063) NHBD (n=239)

* As of 4/30/04. Annualized projection to exceed 400 Total Organ Donors.

Gift of Life Donor ProgramOrgan Donors By Race

2003 2003

HISPANICHISPANICn = 24 (7%)n = 24 (7%)

CAUCASIANCAUCASIANn = 254 (74%)n = 254 (74%)

AFRICAN AMERICANAFRICAN AMERICAN n = 62 (18%)n = 62 (18%)

ASIAN/INDIANASIAN/INDIANn = 4 (1%)n = 4 (1%)

N= 344N= 344

Gift of Life Donor Program Organ Donors By Age

2003

N= 344

0-59 (3%) 16-45

135 (39%)

6-1513 (4%)71+

28 (8%)

46-60114 (33%)

61-7045 (13%)

Gift of Life Donor ProgramOrgan Donors By Age

2003

0

25

50

75

100

125

150

0-5 6-15 16-45 46-60 61-70 71+

Age RangesN=344

Gift of Life Donor Program

Number of Organs Coordinated 1974-2003

0

100

200

300

400

500

600

700

800

900

1000

1100

1200

1300

1400

1500

19741977

19801983

19861989

19921995

19982001

Total Organs Coordinated = 20,300

47123140 169179 218 216

253 272301

332

446

551 536601

557

718

837800 804778

1013

1178

1283 1268

1353

1251

1257

1457 KidneyKidney = 12,005 = 12,005

Liver = 3,674Liver = 3,674

Lung = 992Lung = 992

Heart/Lung = 147Heart/Lung = 147

Pancreas = 855 Pancreas = 855

Heart = 2,607Heart = 2,607

Small Bowel = 20Small Bowel = 20

1362

2003

Gift of Life Donor ProgramGift of Life Donor ProgramTissue Donors*Tissue Donors*

893

1012

925

1043

879

1026

11371118

1027

858

600

800

1000

1200

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

674

PA Act 102PA Act 102Routine ReferralRoutine Referral

*Some patients may donate multiple tissues for transplantation

Tissue Donors

CORNEA 729

INTEGUMENTARY 30

MUSCULOSKELETAL 470

HEART VALVES 196

SAPHENOUS VEINS 110

OTHER 253

Gift of Life Donor Program Region Gift of Life Donor Program Region Tissue DonationTissue Donation

2003 2003

Donor Family SupportDonor Family Support

Framed remembranceFramed remembrance

Donor Family BookletDonor Family Booklet

Gift of Life MedalGift of Life Medal

Gravesite MarkerGravesite Marker

Donor Family Recognition Donor Family Recognition CeremoniesCeremonies

Workshops and ConferencesWorkshops and Conferences

Donor Family CommunicationDonor Family Communication

Family will receive letter from OPO Family will receive letter from OPO explaining how loved one helped others explaining how loved one helped others through donationthrough donation

Letter contains only basic information Letter contains only basic information about recipients (age, marital status, about recipients (age, marital status, hobbies, time on waiting list)hobbies, time on waiting list)

Donor families and recipients may Donor families and recipients may communicate anonymously through OPOcommunicate anonymously through OPO

OPO will arrange direct contact if family OPO will arrange direct contact if family and recipient mutually agreeand recipient mutually agree

The OpportunityThe Opportunity

42 percent of Pennsylvania drivers 42 percent of Pennsylvania drivers have placed the designation on the have placed the designation on the licenselicense

Percentage of registrants by Percentage of registrants by county:county: Centre (52.08%)Centre (52.08%)

Chester (51.23%)Chester (51.23%)

Warren (49.66%)Warren (49.66%)

Cumberland (48.23%)Cumberland (48.23%)

Erie (47.93%)Erie (47.93%)

Bucks (47.45%)Bucks (47.45%)

York (47.25%)York (47.25%)

Fayette (30.78%)Fayette (30.78%)

Philadelphia (29.23%)Philadelphia (29.23%)

16-20 year olds are the largest 16-20 year olds are the largest segment placing the designation on segment placing the designation on the licensethe license

Designation rates plummet from an Designation rates plummet from an average high of 47.3% of females ages average high of 47.3% of females ages 31-40 to less than 17% for individuals 31-40 to less than 17% for individuals 75 and older75 and older

Men are less likely to be registered as Men are less likely to be registered as donors, but most apt to die in donors, but most apt to die in situations in which they can be donorssituations in which they can be donors

The OpportunityThe Opportunity

The OpportunityThe Opportunity

Increase awareness and Increase awareness and understandingunderstanding

Emphasize that Emphasize that donation is lifedonation is life

Stress need to place designation Stress need to place designation on license/state identification on license/state identification card; sign donor card; share your card; sign donor card; share your wishes with familywishes with family