Living Donor Kidney Transplantation: “Beauty and the Beast”

1. Living Donor Kidney Transplantation:“Beauty and the Beast” Gabriel Danovitch MD January 2104 …or “how Paul and friends changed our lives!”

2. Living Donor Transplantation Gabriel Danovitch John J. Kuiper Chair of Nephrology and Renal Transplantation David Geffen School of Medicine at UCLA

3. Transplantation: 1954 “Dr. Merrill and I had an honest and understandable difference of opinion about whether or not…native kidneys should be removed...When (this) exists a compromise is acceptable” J.E. Murray, M.D.

4. Terasaki, et al. NEJM 1995; 333-336.

5. Shifting Landscape of Living Kidney Donation, United States UNOS, 2009

6. Transplantation: 1954 “Asking (the brother) to donate a kidney…is primarily an ethical problem...I think we have to be careful not to be too much swayed by our eagerness to carry out a kidney transplant…” Murray JE, Surgery of the Soul, 2001

7. Ronald Lee Herrick1931-2010 "No matter what happens, I've had 79 good years, no complaints,"

8. Risks of living kidney donationNguyen et al. Lancet 369:87;2007 Mortality 1/3000* Major complications 1/500 Chronic kidney disease 1/500* Increase in BP by approx 5mm/hg “….In view of the available evidence, living donor kidney transplantation is reasonably safe, reliable, and effective”

9. Mjoen et al. Long-term risks for kidney donors. KI on-line 11/2013“Thus, kidney donors are at increased long-term risk for ESRD, cardiovascular,and all-cause mortality compared with a control group of non-donors who would have been eligible for donation”

10. Steiner R et al. Am J Transplant in press: “Kidney diseases typically begin in middle age and take decades to reach ESRD, at a median age of 64”

11. Dew et al. Guidelines for the psychosocial evaluation of living unrelated kidney donors in the United States. AJT 2007;7:1 “At all stages of the evaluation and transplant process, the donor is as legitimately considered to be a patient as the transplant recipient…”.

12. The living donor ‘bargain’ Risk vs Benefit

13. Psychosocial health of living kidney donors:A systematic review. Clemens et al. Amer J Transplant 6:2965;2006 5139 donors in 51 studies 4 years post-op Anxiety and depression uncommon (5-20%) Stable or improved relationships (82-100%) Increased self esteem No change in ‘attractiveness’ (83-93%) Most scored high on QoL measures Most report improved psychosocial health

14. Non-Medical Benefits of Spousal Kidney Donation • To the recipient • To the spouse with a healthy partner • To the couple and their relationship • To their children • To their future progeny

15. Financial disincentives to living kidney donation • Travel; lodging; meals; childcare • Lost wages • Out-of-pocket expenses • Employment insecurity • Insurance insecurity • Physical labor impairment

16. Terasaki, et al. NEJM 1995; 333-336.

18. New York Times 2/18/12: 60 Lives, 30 Kidneys, All Linked

19. Bangladesh 2011

20. Gill J, Bunnapradist M, Danovitch G et al. Transplant Tourism in the United States: A Single-Center Experience. CJASN 2008:3;1820 33 patients, kidney transplants abroad,2003-2007, returned to UCLA for care China (44%), Iran (16%),Philippines (13%). 4 acute hospitalizations/4 graft losses/1 early death 30% incidence of rejection (12% controls) >50% incidence of infection

21. Naqvi et al. Health status and renal function evaluation of kidney vendors: A report form Pakistan. Am J Transplant 2008;8:1444 • Compared 104 kidney vendors to matched LRDs • Vendors mostly poor bonded laborers • Increased post-donation incidence of: -Depression -Pain and disability -Hypertension -Lower GFR -Proteinuria -HBV/HCV

22. Fallahzadeh et al. Comparison of health status and quality of life of related versus paid unrelated living kidney donors. Am J Transplant 13;3210:2013 Compared health status and QOL of 347 paid unrelated donors to 233 related donors “General health and social functioning scores among PUDs were significantly lower than in RDs…Iranian PUDs have a lower QOL and higher incidence of microalbuminuria compared to RD,”

23. Quality of life of Iranian kidney “donors”. Zargooshi J.J Urol 166:1790;2001 Questioned 300 vendors; 6-132 months 79% did not get f/u because of ‘poverty’ 65% negative effect on employment 70% family conflict/ 21% divorce 70% isolation/depression 66% ‘very’ negative financial impact 37% concealed donation

24. The doctor/donor relationship

25. There is more to the evaluation of a donor patient than a history, exam, lab tests and some X-rays Delmonico F. A report of the Amsterdam forum on the care of the live kidney donor: data and medical guidelines. Transplantation 79:S53;2005 Davis C, Delmonico F. Living-donor kidney transplantation: a review of the current practices for the live donor. JASN 16:2098;2065

26. The role of TRUST in donation In non-commercial “altruistic” living donation trust can generally be presumed because of the mutual interest in a favorable outcome. In commercialized donation trust cannot be presumed

27. Need for TRUST in evaluation of potential kidney donors Family history of kidney disease History of kidney stones Use of BP medications Gestational diabetes Exposure to infectious agents Distant malignancy High-risk sex/ Drug abuse OTC abuse History of psychiatric illness Coercion

28. Why the high risk of donor and recipient complications from vended transplants? The donor is lying to the doctor? The doctor is lying to the recipient? The doctor is lying to the donor? The doctor and the donor are lying to the recipient?

29. Bentley J. The influence of risk and monetary payment on the research participation decision making process. J Med Ethics 2007:30;293 “This study also showed that higher levels of monetary payment may influence subjects’ behaviours regarding concealing information about restricted activities”

30. Padilla B, Danovitch G, Lavee J. IMPACT OF LEGAL MEASURES PREVENT TRANSPLANT TOURISM: THE INTERRELATED EXPERIENCE OF THE PHILIPPINES AND ISRAEl. JMHP 2013;16:915 ISRAEL PHILIPPINES

31. The Declaration of Istanbul on Organ Trafficking and Transplant Tourism The Declaration of Istanbul on Organ Trafficking and Transplant Tourism Where would we be without it? www.declarationofistanbul.org Istanbul Summit April 30th – May 2 , 2008

32. One final thought for the New Year! If you plan to get chronic kidney disease ensure you are surrounded by loving and compatible family and friends. …..probably not a bad idea even if your kidney function is normal!

33. Declaration of Istanbul Promotion of deceased donation Availability of ESRD prevention and care Provides clear definitions of Trafficking and Commercialism Differentiates between transplant tourism and travel for transplantation Provided principles for healthy transplant practice Emphasizes national and regional self-sufficiency Provides specific proposals for promotion of deceased and living donation Emphasizes prime necessity for protection of living donors

34. What has the DOI achieved? • Broad international acceptance of the inevitably exploitive nature of transplant tourism, commercialism, and trafficking • Academic “veto” of commercial transplantation • Broad international acceptance of responsibility for the welfare of all living donors • Early recognition of the DOI in national legislation • Progress in known “hotspots” of donor exploitation • Minimal “export” from the “Western” world and Americas • Progress towards the end “donation by execution” in China • Continued coherence and commitment of DICG

35. Where have we failed? • Inadequate progress towards promoting deceased donation • Removal of “disincentives” to donation • Prevention of “underground” commercialism • Regression in some “hotspots” • Prevention of end-stage organ failure • Development of non-transplant alternatives for end-stage organ failure