Andrew M. Cameron, MD/PhD

Associate Professor of SurgerySurgical Director of Liver TransplantationThe Johns Hopkins University

11/26/12

Organ Donation-US and Global Perspectives

Organ donation and transplant rates vary widely across the globe-but there remains an almost universal shortage of deceased donors.

Introduction: Donation (I)

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.

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.

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.

The Declaration of Istanbul

Set of principles and series of proposals to ban the sale of organs and restrict transplant tourism

Fails to meet the need for transplantable organs in all countries-it is almost non-existent in many countries

Deceased Donation

Why is there (still) an organ shortage?

-95% of the US supports donation-Gallup, 2005

Traditionally expressed as donors per million of population (pmp)

International Epidemiology of Organ Donation

In Turkey: deceased donation rates are low, live donation accounts for 75% of transplants.

-some countries (Japan) have relied almost entirely on LD, others (Spain) on deceased donors. In most, both are practiced…

However, 15,000 wait for a kidney in Turkey, 1,000 wait for a liver with demand increasing with time…

There is a dramatic organ shortage in the US

5,901 6,952 8,200 9,537 11,917 13,284 14,755 14,403 14,20515,029

23,149

35,192

53,381

71,628

81,979

94,472 97,782 100,775

0

20,000

40,000

60,000

80,000

100,000

120,000

140,000

1998 1991 1994 1997 2000 2003 2006 2007 2008

Waiting list

Donors

UNOS waitlist 11/23/12: 116,652

Why is there an organ shortage?

-supply vs demandsupply: deceased donors

2.5 million die/yearyields 10k-15k donors

IOM: approx 5-10k lost due to failure to obtain consentaverage donation: 3 organs/donor

waitlist: 116k

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

Current registration system:DMV based

Multiple public health campaignsto improve organ donation

Ineffective: or not as effective as with:DWI, smoking, cancer screening, seat belts…

Why do people say no at the DMV?

1) mistrust of doctors/hospitals/allocation system2) “deservingness” of recipients3) discomfort with topic4) religious, health prohibitions

-need for this discussion to take place in optimized environment: “amongst friends”

-share decision amongst other possible registrants

-ability to immediately act upon information received

Education is the Key

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.

Something we tried in the US using education via social media…

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.

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.

Objectives: We evaluated the effect of education about “Organ Donation and Transplantation” over the false beliefs of the participants.

ARTICLE: Importance of Education in Organ Donation-Tonguc Utku Yilmaz

Experimental and Clinical Transplantation: 9(6) 2011

150 million users in US

1 billion worldwide

“a communication utility”

“a tool to help you get to know your friends and family better”

Facebook:

Specify status as organ donor in profile

1) Link to state registry

2) Alert your friends

3) Educational materials

The Facebook Organ Donor Initiative

Here’s what you do:

1)click on “Life Event”

Facebook Donor Tool

2) Click on “Health & Wellness”

Facebook Donor Tool

3) Click on “Organ Donor”

Facebook Donor Tool

There’s a link for more information and a link to your state registry…

Facebook Donor Tool

Where you click on your state to go throughthe official 2 minute registration process

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 friendsetc, etc...

Facebook Donor Tool

May 1, 2012: First day: 2,400% nationwide

First week: 1,000% increase in donor registration

Totals over 2 weeks: 600%

The Response:

First day: 2,390% nationwide

First week: 1,225% after 2 weeks: 200%

Maryland:

Fb is everywhere…

“immediate opportunity”

“discussion amongst friends”

“chronic virality”

Why it “worked”:

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

Facebook Donor Tool

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

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…

What’s next:

How about using Facebook to encourage organ donation in Turkey….

Facebook Countries Statistics# Country Number of

Users Penetration

1 United States 168,494,580 54.31%

2 Brazil 61,813,580 30.74%

3 India 60,600,520 5.17%

4 Indonesia 49,884,160 20.53%

5 Mexico 39,571,380 35.18%

6 United Kingdom 33,785,600 54.19%

7 Turkey 31,809,720 40.88%

8 Philippines 29,877,060 29.91%

9 France 25,281,460 39.03%

10 Germany 25,189,320 30.61%

Turkey Facebook statisticsTotal Facebook Users 31,809,720Position in the list 7Penetration of population 40.88%

Penetration of online population 90.88%

User age distribution on Facebook in Turkey

Male/Female User Ratio on Facebook in Turkey

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

International Organ Donation:

-Obstacles to increasing deceased donation will be improved by education,possibly via social media