Disclosure What We Learned from Neighbor Countries and What We Do Now

9/4/2018

ACTIVATION OF ORGAN DONATION IN KOREA Disclosure What we learned from neighbor countries and what we do now

• I HAVE NO RELEVANT FINANCIAL RELATIONSHIPS WITH ANY COMPANIES RELATED TO THE CONTENT

WON-HYUN CHO, MD OF THIS COURSE President, Korea Organ Donation Agency (KODA) Emeritus professor, Keimyung University School of Medicine, Korea

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History of Organ Transplantation in Korea Deceased and living donor pmp and

1999: 2009: Vitallink transplantation of Korea Transplantation law 2011: KODA 1993: KMA guideline 2010: Revised 2016: Deceased D PMP 2000: KONOS for BD Law & 2017: New KODA KoDoNet 출범 2005 2013 2016 1991: NGOs for organ 2003:HOPO Promotion activity 1995: Brain Death Seoul Declaration 2008: 11.2 Istabbul 10.1 Total population (million) 48.7 49.3 50.1 Decaration5.8 7.2 No. of Deceased D 5.3 91 416 573 3.4 2010 Donation rate / pmp 1.87 8.43 11.2 2000 No. of TPX from DD 285 1,364 1,888 LDKT: living donor Kidney TPL 1988 DDKT: deceased donor KT 2001:DDBT DDLT: Deceased donor Liver TPL TPX rate / pmp 5.85 27.7 37.7 1969 1992:DDPT LDLT: Living donor LT 1992:DDHT DDHT: Deceased donor heart T No. of TPX from LD 2002: (1) 2:1 LDLT DDPT: Deceased donor pancreas T 1,270 1,834 2.143 1994: LDLT, (2) Sen KT DDLungT: Deceased donor lung T multiorgan TPL 1999: Islet cell DDBT: Deceased donor bowel T TPX rate / pmp 26.1 37.2 42.8 1979:DDKT TPL Sen KT: KT between sensitized D & R 2007: Laparoscopic 1996: donor hepatectomy 1969:LDKT DDLungT 1988:DDLT UCSF transplant 2018 09/20/2018 3 09/20/2018 UCSF transplant 2018 4

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Annual number of deceased donor, 1996-2017 1 What we focused at each period (case) 1500. . Living DT in 2017 : 2,272 . Deceased DT in 2017: 1,693 Before legislation After legislation Reform the law 600 (~2000) (2000-2009) (2010 ~) 573 550

501 500  Living donor TPL 01 515  KONOS for waiting 446 450  Possibility of trade list, allocation &  Required reporting Before legislation 416 Organ procure pmp >2.8 409 system 400  Deceased donor TPL campaign (Vitallink 02 368 under guideline of and NGOs)  IOPO system 350 03  OPO & HOPO system  Data registry The introduction of KMA 300 Revised National Transplant Act  Organ trade illegal organ donation system IOPO system & 250 268 Required reporting system • Need transplant act To Neighboring country 256 261 • Living donor safety after 200 • Need nationwide • Organ and tissue Legislation donation 162 waiting list procurement 150 148 • Increasing transplant 141 Revision of law • Need allocation center • Assist legislation 100 tourism 91 • Need to prohibit organ • Assist national transplant 68 from Living to Deceased 50 trade framework 66 36 52 0 • Need public campaign 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 09/20/2018 5 UCSF transplant 2018

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1 Problems before 2000 1 Problems before 2000 As deceased donor and waiting list increased, EVOLVING ORGAN TRADE

Individual trade (~’80) Systemized trade (~‘90) Low income individual Web based trade (~2000) Under ground Oversea trade organization Inter-countries (domestic) (Neighboring Global Personal countries) problem Social National Global Need coordination and cooperation UCSF transplant 2018 09/20/2018 8

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1 Problems before 2000 1 Problems before 2000 NEED BLUE PRINT

• Need transplant act Poor communication between transplant centers cause to increase discard • Need nationwide Rate of the procured organs !!! waiting list • Need allocation center • Need to prohibit organ Need Recipient and Donor trade Registry Nationwide !! • Need public campaign

Necessity of Nationwide organ Organ donation & transplantation sharing and procurement system ; Legislation of transplant act in 2000 Management system is urgent ! Reported on Newspaper, late 1990’

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2 What we focused at each period 2.1NationalWe built& Academic national society system & infrastructure for DD transplantation

Before legislation After legislation Reform the law umbrella (~2000) (2000-2009) (2010 ~) of transplantation Law  Living donor TPL  KONOS for waiting  Possibility of trade list, allocation &  Required reporting Regulation & coordination Data registry & quality (KOTRY)  Deceased donor TPL campaign (Vitallink system under guideline of and NGOs)  IOPO system KMA  OPO & HOPO system  Data registry System of shared responsibilities  Organ trade illegal

• Need transplant act • Living donor care after To Neighboring country • Need nationwide donation • Organ and tissue waiting list • Increasing transplant procurement • Need allocation center tourism • Assist legislation • Need to prohibit organ from Living to Deceased • Assist national transplant trade • Public awareness framework Organ Procurement Allocation Transplantation • Need public campaign OPO (KODA) (KONOS) (Transplant center) Efforts to activate organ donation (NGOs)

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2.2 For public awareness about organ transplantation and donation : translation 2.2 For public awareness about organ transplantation and donation Also to medical professionals, government, congress people

1991. Lee Gutkind 2015. Reg Green 1997. Ota Kazuo, 2013. Organ donation, 2014. Understanding organ 2011. Vitallink Many sleepless nights Nicholas effect Tokyo Women University Opportunities for action ; donation. Understanding whole process Hospital Committee on increasing rate Applied behavioral science of organ donation of organ donation perspectives

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2.2 World Transplant Games for public awareness 2.2 For public awareness : campaigning 2011. Gotebory, Sweden Ambassador, Congressman & Actor

Rotarian congress Donor sound

Korea Transplant Games

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2.3 For establishing national structures such as OPO and KONOS 2.4 For legislation of transplant law : Living donor safety

DONOR SAFETY AND CARE AFTER ORGAN DONATION

For Establishing OPO

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3 Another obstacle we had experienced were… 3.1 Revision of transplant law : IOPO / Required reporting system / Data registry

Before legislation After legislation Reform the law (~2000) (2000-2009) (2010 ~)

 Living donor TPL  KONOS for waiting For more donation  Possibility of trade list, allocation &  Required reporting  Deceased donor TPL campaign (Vitallink system under guideline of and NGOs) KMA  OPO & HOPO system  IOPO system  Organ trade illegal  Data registry

• Need transplant act • Living donor safety To Neighboring country • Need nationwide after donation • Organ and tissue waiting list • Increasing oversea procurement • Need allocation center • transplantation Assist legislation • Need to prohibit organ • Assist national transplant trade • Public awareness framework • Need public campaign

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3.2 Establishing Independent OPO (KODA) 3.3 Campaign to change the culture Established Independent OPO (KODA) FUNERAL CULTURE 2011. 6. 27

Non-profit, professional, ethical, NGO Rate of Cremation : from 30 to 80 % Also increase donation number ! UCSF transplant 2018 09/20/2018 21 UCSF transplant 2018 09/20/2018 22

3.4 To increase public awareness and realization 4 Positive effect of revised law and negative effect by ? (case) 1500. . DONOR CARD IN KOREA . To Neighbor country 03 600 • Organ and tissue Revised National 573 550 procurement Transplant Act But still 3% of total population OPO system501 500 • Assist legislation 515 446 450 • Assist national 416 409 400 transplant framework 368 01 350 02 Before legislation The introduction of 300 organ donation system 04 250 268 256 261 • Merging between organ & tissue OPOs 200 • Decreasing donor number 162 150 141 148 • Attitude of procure team

100 • Change of brain death cause 91 68 • New breakthrough 50 66 36 52 0 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 UCSF transplant 2018 09/20/2018 23 UCSF transplant 2018 09/20/2018 24

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4.2 4.1 Disharmony after merging organ & tissue OPO Negative effect to public by media reports WERTHER EFFECT ? KODA Lab 80 “ I regret my son’s NICHOLAS EFFECT ! donation …..” (2017.10.9 SBS Medical eval. Brain death Family care 70 report) Organ Procurement Positive and negative effect by media report 2016 Consent declaration program 60 Allocation KODA 2016 Call by KONOS 50 2015 Tissue Consent 2014 40 2017 2008 2018? 30 2009 2009 2008 20

Procurement Processing Storage Distribution KPTB 10 2007

0 Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec KODA: Korea Organ Donation Agency 2007 2008 2009 2014 2015 2016 2017 UCSF transplant 2018 KPTB: Korea Public Tissue Bank 09/20/2018 25 UCSF transplant 2018 09/20/2018 26

4.3 Attitude of medical staffs in ICU, OR. 4.4 Decreasing death rate by traffic accident & CVA EDUCATE MEDICAL STAFFS 1. Conflict between transplant surgeon and attending physician Death number, Car number Traffic Accident number 2. About organ procure team (impolite action between medical persons) 3. Hospital staffs who contact the donor and family Death by traffic accident Number of registered Carx103 Number of traffic accident

Pre-congress course for young transplant surgeons and staffs

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4.5 Increasing old age donor and death by cardiac disease 5 WE NEED A BREAKTHROUGH IN 2018 Death number by age, 2005 - 2015 Trend of 5 major death cause, 2005-2015 Per 105 population

cancer

• Increasing public recognition  Protect people from organ trade about organ donation  Prohibit organ trafficking  Ask national self-sufficiency • Expand donor source : ECD, DCD CVA  Decreasing DBD source • Revision of transplant law : Cardiac ds • • Mortality by TA Brain death = death 1. Activate organ donation • Respect deceased will • Mortality by CVA Suicide inside Korea (first person consent)  Increased ECD source Pneumonia 2. Share our experience with • Old age donor • And more … (44.5 in 2013 48.2 in 2017) neighboring countries

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5.2 Share our experience with 5.2 neighboring countries, why?

• We realized that organ shortage and trafficking in neighbor countries are not an individual problem, but A family problem, A social & national problem & A global problem

Most of victims(seller) are poor, weak, illiterate people

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5.2 What we are doing recently : to neighbor country and support national transplant & donation system 5.2 POINTS WHAT THEY WANT TO ! WHO & VITALLINK WORKSHOP SUPPORT UNDERDEVELOPED COUNTRY • LEARN : ORGAN, TISSUE, CELL DONATION & TRANSPLANTATION • About ethical transplantation and donation, necessity of law • How to increase organ donor ? • Necessity of recipient registry • How to allocate donated organs • Why data registry is necessary • How to approach donor family • Medical and surgical skills (D&R)

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5.2 Educational program, Come and Go 5.2 Realize organ shortage is a global issue & ethical organ donation, transplantation is necessary

2016. TTS, HongKong 2018. Myanmar

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6.1 Summary 5.2 Finally, they reform the transplant law in Mongolia and activate FOR ACTIVATION OF DOMESTIC ORGAN DONATION

• COOPERATION FOR NEW BREAKTHROUGH WITH • Transplant society & coordinator association • KONOS and KODA with MoH • With Congress for revision of transplant law • NGOs for national campaign • Medical association and Hospital association • MORE EFFORT TO DETECT Potential Brain Death • MORE POSITIVE NEWS TO THE PUBLIC • STUDENT EDUCATION BY TRAINED TEACHER

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6.2 Summary S Summary Medical CONTINUE OUR WORKS IN NEIGHBOR COUNTRIES professional - VITALLINK WORKSHOP -

• HUMAN RESOURCES : Education And training (skill, knowledge, ethics) • Medical staffs & coordinators education Recruiter • HOSPITAL ENVIRONMENT AND FACILITIES : for immunologic lab, pathology Organ bank • MEDICAL INSURANCE SYSTEM AND GOVERNMENT WILL : contact government Buyer Transporter • LEGISLATION OF BRAIN DEATH & TRANSPLANT LAW & GIFT OF LIFE :contact government • National system and organization for registration of waiting, allocation Seller • Prohibit organ trade, Trafficking  Protect Asian people & Medical Professionals from circle of organ laundry and • INTEREST OF TRANSPLANTATION TO PUBLIC and medical staffs of related field activate ethical transplantation  Preparing a new breakthrough to activate our UCSF transplant 2018 09/20/2018 39 UCSF transplant 2018 domestic organ donation 09/20/2018 40