DISCLOSURE INFORMATION NO CONFLICT OF INTEREST

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DISCLOSURE INFORMATION NO CONFLICT OF INTEREST Dado el carácter y la finalidad exclusivamente docente y eminentemente ilustrativa de las explicaciones en esta Sesión, el autor se acoge al artículo 32 de la Ley de Propiedad Intelectual vigente en España, respecto al uso parcial de obras ajenas como imágenes, gráficos u otro material contenidos en las diferentes diapositivas Todas las imágenes presentadas se incluyen como citas necesarias para ilustrar las explicaciones de esta conferencia

LIVING DONATION AS FIRST CHOICE: BETWEEN JUSTICE AND EQUITY OF ACCESS TO TRANSPLANTATION Dr. David Paredes, MD, CETC Senior Consultant. Donation and Transplant Coordination Section Hospital Clínic de Barcelona Associate Professor - Surgery Department University of Barcelona dparedes@clinic.ub.es

WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation. May 2010

DEFINITIONS Justice: Is the lawful and moral maintenance of what is right for a person, or what is due to a person. Distributive justice, distributing a resource fairly throughout a given population. Guides organ allocation and distribution. Compensatory justice, is the belief that un injured person should receive a benefit proportional to a loss or for taking more of a risk.

DEFINITIONS Equity: In medical practice is achieved when patients with similar expected degrees of illness and similar expected outcomes have comparable access to treatment. In organ allocation and distribution refers to same probabilities to be transplanted. It requires WL criteria are developed, prioritization system be consistent and transparent, and that organs are broadly distributed in an attempt to equalize the probability of an organ offer.

DEFINITIONS Utility: To achieve the maximal benefits from a limited resource for the population. Often is defined as survival in transplantation. It only address the outcome of patients receiving the transplant and does not account for those candidates who remain on the list and who do not receive the transplant. New approach to transplant benefit: incremental life expectancy of a patient with a Tx compared to who remain in the WL.

Europe Transplant Activity Transplant Newsletter September 2014 www.ont. es

USA Canada Australia Transplant Activity Transplant Newsletter September 2014 www.ont. es

Latinoamerica Transplant Activity Transplant Newsletter September 2014 www.ont. es

Global Transplant Activity Transplant Newsletter September 2014 www.ont. es

IRODAT. WWW.TPM.ORG

Spain USA Netherlands IRODAT. WWW.TPM.ORG

Netherlands USA Spain IRODAT. WWW.TPM.ORG

Living liver Transplant Spain 2002 2014 50 41 31 18 25 18 25 28 29 20 28 28 23 21 40 30 20 10 0 28 22 12 16 18 21 22 10 24 13 10 14 6 13 2 4 4 2 3 9 4 2 4 7 6 5 6 8 4 4 2 4 7 5 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 14 H. Clínic Spain Adult Spain Children

Deceased donors in Spain (DBD + DCD)

Progressive decline in the potential of Donation after Brain Death Spanish data De la Rosa G. Am J Transplant 2012; 12:2507

Kidney waiting list & transplantation Eurotransplant 1991-2012

Demanarli a Hawart Nattan x filadelfia

Patients on the waiting list for Kidney Tx pmp Kidney Tx pmp Kidney transplants and kidney waiting list in Spain Kidney Tx Waiting List pmp (31st December) Kidney Tx from Deceased Donors pmp Kidney Tx from Living Donors pmp 150 150 125 125 100 100 75 75 50 50 25 25 0 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 0 Preemptive Kidney Tx is exceptional

Transplantation. 99(3):476-481, March 2015. FIGURE 4. Global distribution of (A) kidney transplantation rates, per million population, in 2012, (B) dialysis prevalence, per million population, in 2010 or nearest year for which data were available, (C) mortality attributable to CKD in the population aged less than 70 years, crude rate per 100,000, in 2010, and (D) age-standardized burden of diabetes mellitus, hypertension, and obesity in the adult population, 2008. 5

Figure 54. Situation of RRT patients residing in Catalonia with regard to transplantation, 1990-2012 8000 Nombre de malalts 100% 80% 6000 60% 4000 40% 2000 20% 0 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 0% 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 En llista d'espera Pendent d'estudis Exclusió voluntària Exclusió per edat Exclusió per causes clíniques Trasplantament

100% Figure 55. Situation of the waiting list and mortality. New cases in 1990-2012 that were not excluded from the waiting list at the start of RRT 80% 60% 40% 20% 0% Inici 1r 2n 3r 4t 5è 6è 7è 8è 9è Any del TSR Trasplantament En llista d'espera Pendent d'estudis Exclusió per edat Exclusió voluntària Exclusió per causes clíniques Èxitus

Ethical reasons to increase Living Donation 1. Can be offered to all recipients in EERD WHEN? 2. Is an stimulus for those without living donors for WL 3. Can offer more options to complex cases 4. In situations where cadaveric donation is reduced or is a tendency to decrease, LD can be justified a. Special situations: Legal problems, religion and definition of death b. Organizational problems, lack of capacitation, health system, allocation of resources

Ethical reasons for caution in Living Donation 1. Not legal regulation about relationship between D-R 2. Allocation and distribution criteria transparent and fairly 3. Are common criteria for enter in the WL? Same opportunity according to geographical distribution? 4. Is the donor totally free? Moral conviction, familiar pressure, economical reasons 5. LD can solve some problems but can let appear some familiar difficulties: divorce, previous couples, young siblings 6. Economical problems and disadvantages: future insurances, Laboral leave, lost of job 7. Foreign donors: health protection and follow-up 8. Family and social networks, external support

Live Organ Donor Consensus Group: Consensus statement: JAMA 2000 The Amsterdam Forum: Care of the Live Kidney Donor EDTCO Living Donor Committee: 2004 ELPAT ESOT: 2007 May 2006 The Vancouver Forum The care of the live organ donor: liver, lung, pancreas and intestine, data and medical guideliness. May 2006, Vancouver Canada. Transplantation 81 (10), May 2006

Third World Health Organization (WHO) Global Consultation on Organ Donation and Transplantation: Striving to Achieve Self-Sufficiency held in Madrid, Spain, on March 23 25, 2010 WHO Guiding Principles for Human Cell, Tissue and organ Transplantation and the Declaration of Istanbul on Organ Trafficking and Transplant Tourism

LIDOBS CONSORTIUM This project is receiving co-funding from the European Union in the framework of the EU Health Programme 2009-2012 www.eulivingdonor.eu

Iran Experience Consensus physicians and religious leaders 1988 started controlled kidney LURD Governmental award: Rewarded gifting: Law 1997 Only public hospitals (mainly male donors) Only for iranian donors & recipients No kidney waiting list Inmunosupression through a charity foundation Israel 2008: Incentivized organ donation, removing disincentives for living donation Pakistan New Law THOTO 2010; China, India... Payment only for living unrelated donors

We go on encouraging living relatives to provide organ taking whatever risks that entails, when families of brain dead people may never be asked whether they which to donate their dead relative organs. Is it ethical to harm the living before harvesting the dead? T. G. Starzl To quote from the preamble to the Declaration The legacy of transplantation must not be the impoverished victims of organ trafficking and transplant tourism but rather a celebration of the gift of health by one individual to another.

RESEARCH AND DEVELOPMENT QUALITY Safety, quality control, efficacy SOCIAL ATTITUDE PAYMENT Professionals, transplant center EDUCATION Public - Health professionals TRANSPLANT Follow-up, inmunosupression HEALTH SYSTEM SHARING Transplant office, EFG, ET, ONT, SKT, Regional office PROCUREMENT OPO, centers, others NATIONAL ECONOMY NEW VITAL CYCLE TPM : Transplant Procurement Management