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Andrew M. Cameron, MD/PhD Associate Professor of Surgery

Organ Donation- US and Global Perspectives. Andrew M. Cameron, MD/PhD Associate Professor of Surgery Surgical Director of Liver Transplantation The Johns Hopkins University 11/26/12. Introduction: Donation (I).

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Andrew M. Cameron, MD/PhD Associate Professor of Surgery

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  1. Organ Donation- US and Global Perspectives Andrew M. Cameron, MD/PhD Associate Professor of Surgery Surgical Director of Liver Transplantation The Johns Hopkins University 11/26/12

  2. Introduction: Donation (I) Organ donation and transplant rates vary widely across the globe-but there remains an almost universal shortage of deceased donors. The unmet need for transplants has resulted in many systematic approaches to increase donor rates- but there have also been practices that have crossed the boundaries of legal and ethical acceptability. Recent years have seen intense international interest from international political organizations, led by the WHO and professional bodies, like The Transplantation Society, to develop a series of legal and ethical frameworks designed to encourage all countries to eradicate unacceptable practices while introducing programs that strive to achieve national or regional self-sufficiency in meeting the need for organ transplants.

  3. Introduction: Donation (II) Living donation remains the mainstay of transplantation in many parts of the world- many of the controversial areas of practice revolve around exploitation of living donors. Controversial areas in deceased donation exist as well- especially around Organ Trafficking and Transplant tourism. These concerns were addressed by an International meeting held in 2008 and led to the Declaration of Istanbul.

  4. The Declaration of Istanbul International meeting (2008): Mario Abbud-Filho, FAMERP and Institute of Urology and Nephrology, Sao Paolo; Mustafa Al-Mousawi, Middle East Society for Organ Transplantation, Kuwait City; Ali Abdulkareem Alobaidli, Kidney Transplant Services, Sheikh Khalifa Medical City, Abu Dhabi; Mona Nasir Al-Rukhaimi, Renal Unit, Dubai Hospital, Dubai; Alireza Bagheri, Tehran University of Medical Sciences; M A Bakr, Urology & Nephrology Centre, Mansoura University, Mansoura; Antoine Barbari, Rafik Hariri University Hospital, Beirut; Alexander Capron, University of Southern California, Los Angeles; Jeremy R Chapman, The Transplantation Society and University of Sydney; William Couser, International Society of Nephrology, Seattle; Gabriel Danovitch, David Geffen School of Medicine at UCLA; Leonardo D de Castro, University of the Philippines, Quezon City; Francis L Delmonico, The Transplantation Society, Boston; Iraj Fazel, Academy of Medical Sciences, Tehran; Mehmet Haberal, Baskent University and Turkish Transplantation Society, Ankara; Vivekanand Jha, Postgraduate Institute of Medical Education and Research, Chandigarh; Eiji Kobayashi, Jichi Medical University, Tochigi; Norbert Lameire, University Hospital, Ghent; Adeera Levin, University of British Columbia, Vancouver; Mahamane Kalil Maïga, University of Bamako; Dominique Martin, Centre for Applied Philosophy and Public Ethics, University of Melbourne; Marwan Masri, Asian Society of Transplantation, Beirut; Saraladevi Naicker, University of the Witwatersrand, Johannesburg; Luc Noël, WHO, Geneva; S Adibul Hasan Rizvi, Sindh Institute of Urology and Transplantation, Karachi; Bernardo Rodriguez-Iturbe, International Society of Nephrology, Maracaibo; Mohamed H Sayegh, Harvard Medical School, Boston; Faissal AM Shaheen, Saudi Council for Organ Transplantation, Jeddah; A G Stephan, Nephrology Division, Rizk Hopsital, Beirut; Annika Tibell, Karolinska Institute, Stockholm; Matthew Kwok-Lung Tong, Princess Margaret Hospital, Hong Kong; and A Vathsala, National University of Singapore. Set of principles and series of proposals to ban the sale of organs and restrict transplant tourism

  5. Deceased Donation Fails to meet the need for transplantable organs in all countries-it is almost non-existent in many countries -95% of the US supports donation -Gallup, 2005 Why is there (still) an organ shortage?

  6. International Epidemiology of Organ Donation Traditionally expressed as donors per million of population (pmp) -some countries (Japan) have relied almost entirely on LD, others (Spain) on deceased donors. In most, both are practiced… In Turkey: deceased donation rates are low, live donation accounts for 75% of transplants. However, 15,000 wait for a kidney in Turkey, 1,000 wait for a liver with demand increasing with time…

  7. There is a dramatic organ shortage in the US UNOS waitlist 11/23/12: 116,652

  8. Why is there an organ shortage? -supply vs demand supply: deceased donors 2.5 million die/year yields 10k-15k donors IOM: approx 5-10k lost due to failure to obtain consent average donation: 3 organs/donor waitlist: 116k

  9. What is the problem with donor registration? -no problem: over 100 million registered -40% of the US but, 95% of the US supports donation -Gallup, 2005 disconnect: obstacles/ inefficiencies

  10. Current registration system: DMV based Multiple public health campaigns to improve organ donation Ineffective: or not as effective as with: DWI, smoking, cancer screening, seat belts…

  11. 1) mistrust of doctors/hospitals/allocation system Why do people say no at the DMV? 2) “deservingness” of recipients 3) discomfort with topic 4) religious, health prohibitions -need for this discussion to take place in optimized environment: “amongst friends” -ability to immediately act upon information received -share decision amongst other possible registrants

  12. Education is the Key ARTICLE: Importance of Education in Organ Donation -Tonguc Utku Yilmaz Experimental and Clinical Transplantation: 9(6) 2011 Objectives:We evaluated the effect of education about “Organ Donation and Transplantation” over the false beliefs of the participants. Materials and Methods:This interventional study was performed in a military unit between January and March 2010. Data on organ donation and demographic characteristics were collected by a questionnaire. The researcher gave the lesson, and then collected the data by the same questionnaire 2 months later. Results:The rate of volunteering for organ donation increased from 45.4% to 84.8% (P < .001). Rate of consent for organ donations by relatives increased from 41% to 80.3% (P < .001). Also, general knowledge about organ donation increased from 34.8% to 93.7% (P < .001). Wrong beliefs about organ donation disappeared after the education. The entire organ donation rate among the volunteer participants increased from 60% to 84% (P < .001). No significant relation was found between volunteering to donate organs, and education and economic status. Conclusions: Education could correct false information and might lead to higher organ donation rates. This education (which gave positive results in a military unit) could become widespread. Something we tried in the US using education via social media…

  13. Facebook: • 150 million users in US • 1 billion worldwide • “a communication utility” “a tool to help you get to know your friends and family better”

  14. The Facebook Organ Donor Initiative • Specify status as organ donor in profile 1) Link to state registry 2) Alert your friends 3) Educational materials

  15. Facebook Donor Tool • Here’s what you do: • click on “Life Event”

  16. Facebook Donor Tool • 2) Click on • “Health & Wellness”

  17. Facebook Donor Tool 3) Click on “Organ Donor”

  18. Facebook Donor Tool There’s a link for more information and a link to your state registry…

  19. Facebook Donor Tool Where you click on your state to go through the official 2 minute registration process

  20. Facebook Donor Tool Now it’s official. And a message is sent to all your friends telling them of your new status who hopefully do the same …as do their friends etc, etc...

  21. The Response: May 1, 2012: First day: 2,400% nationwide • First week: 1,000% increase in donor registration • Totals over 2 weeks: 600%

  22. Maryland: First day: 2,390% nationwide • First week: 1,225% • after 2 weeks: 200%

  23. Why it “worked”: • Fb is everywhere… • “immediate opportunity” • “discussion amongst friends” • “chronic virality”

  24. Facebook Donor Tool • FB organ donor tool is an “easy portal” • Hopefully gets easier→mobile platforms • New opportunities could focus on this “immediate capture” • Integration with DMV efforts

  25. What’s next: • Living donor app Most of list is waiting for a kidney: 80,000 Need could be met with living donation Obstacles to finding a donor are medical and social Share LIFE

  26. What’s next: • Roll out to (all) countries and Timeline takes over • Australia, Brazil, Colombia, Denmark, Ireland, Japan, Korea, Netherlands, New Zealand, South Africa, Sweden, United Kingdom, United States • On mobile phone platforms… • How about using Facebook to encourage organ donation in Turkey….

  27. User age distribution on Facebook in Turkey Male/Female User Ratio on Facebook in Turkey

  28. International Organ Donation: Conclusions: -Areas of concern but mostly we need education and encouragement -Much of need could be met with living donation -Obstacles to finding a donor are medical and social -Obstacles to increasing deceased donation will be improved by education, possibly via social media

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