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Living Donor Liver Transplantation in the United States: why isn’t it growing?

Julie Heimbach, MD
Mayo Clinic
Rochester, Minnesota

There were 252 cases of living donor liver transplantation (LDLT) performed in the United States in 2013, comprising just 4% of the total liver transplant volume for this year and very similar to the number performed over the past several years.1  By contrast, there were more than 300 LDLTs performed at just one center in Seoul, South Korea, in 2013. There are several centers across Asia which are performing similarly high annual volumes.2,3  Given the critical shortage of available deceased donor liver allografts as well as the increasing waitlist mortality, understanding the reason for the low utilization of LDLT in the United States is an important step toward trying to provide increased access to transplant for patients suffering from the potentially lethal complications of end-stage liver disease.

Examining why this practice is highly successful in in Asia, while far less prevalent in the United States, may best be done by elucidating differences between these regions and then determining whether these differences are likely to influence the growth of LDLT.  The first and most obvious difference is the availability of deceased donor transplant. While this option is extremely limited in many Asian countries, in the United States the incredible altruism of donor families and individuals who joined donor registries prior to their death, as well as an efficient allocation system, has provided access to LT for more than 130,000 people since 1988 and to nearly 50 percent of the active waitlist in 2013.1 For a variety of reasons, deceased donor organ transplantation has not been nearly as successful in many Asian countries, though important strides forward are being made.2,3  In the United States, the possibility of deceased donor transplant influences both patient and, perhaps more importantly, provider preference.  It may be more difficult for patients to accept the remarkable gift of living donor transplant knowing it comes with the need for their loved one to recover from a major surgery and to incur the risk of serious complications when there is the hope (no matter how unrealistic) of a potential alternative.

This hope is similar to the core American value that anyone can rise to the top if they just persevere.  Even though there are multiple possibilities for patients waiting for LT—patients can stay the same with ongoing complications such as ascites, encephalopathy, bleeding, and/or recurrent infections, or they can get sicker. If they get sicker, they may get a high enough score to be transplanted, they may get too sick to undergo transplantation, or they may die.  While a patient’s history, etiology of liver disease, and MELD score can sometimes be helpful in predicting these outcomes, there is certainly no crystal ball. Patients know if they chose to undergo LDLT, their donor will undergo a major surgical procedure and will feel unwell for a period of time, and they know that there is a possibility of serious complications. If the patient is willing to just keep waiting and is tough enough, the loved one could be spared this suffering. Hepatologists and surgeons also hold on to this hope for a deceased donor transplant, as we would always prefer to have one patient at risk instead of two. Even though we know the data, we are very good at remembering that one time when our lower MELD patient had an opportunity to get a transplant with an increased risk donor or last minute re-allocation. If there is no access to deceased donor transplantation, then the choice is between continued suffering (and ultimately death) or living donor transplant. This burden of perceived choice can be a heavy one, not only for the donor and recipient but also for the physicians.

A second difference in the United States is that the relatively small number of LDLTs are spread over a relatively large number of centers. Both the living donor hepatectomy and the transplant are technically demanding procedures, with a well-documented learning curve.4  Beyond the learning curve, however, is the level of assurance for surgeons that comes from doing something over and over and over again. Not only does this impact surgeons, but it also may be easier for hepatologists to recommend and easier for patients to accept when it is perceived as the standard or at least a very common option, rather than the exception. The Asian countries which have adopted this practice so successfully have several large centers with a concentrated experience, built upon a long tradition of very complex and technically demanding hepatobiliary surgery.

Another barrier to a more widespread adoption of LDLT in the United States is the impact to the donor, which is not only physical and emotional, but also financial. Unlike many other countries, the United States lacks national health care; therefore, if a patient’s ability to remain employed is threatened by the donation process, not only is their livelihood at risk, but also, even more importantly, their health coverage, plus potentially the health coverage for their family.  Concerns about pre-existing conditions and lack of future insurability may have been reduced with the adoption of the Affordable Care Act, though given the complexity of the new system and reports of health care coverage being denied post donation, there is continued uncertainty.5  In addition, the impact of lost wages combined with out of pocket expenses, especially given the long distances many donors need to travel to get to transplant centers, can be quite substantial. The potential impact to the donors’ physical and emotional health is significant and likely quite similar whether donation occurs in the United States or in Asia, although it may be reduced by careful evaluation and robust support systems.

What is the path forward? Highlighting current waitlist outcomes for LT candidates combined with continued cumulative experience with LDLT gradually being gained by centers across the United States, as well as continued careful reporting of donor and recipient outcomes, will hopefully foster the growth of LDLT in the United States. Advances like laparoscopic assisted mobilization and laparoscopic hepatectomy may also be of benefit in more widespread acceptance. Eliminating the financial disincentives to donation should also be of paramount importance. Reimbursement of living donor expenses, as is currently provided under the National Living Donor Assistance Center, should be expanded to include all donors who request such assistance. Options for ensuring access to health care coverage for all living donors should also be explored, whether this is through individual state exchanges or through other national programs. Finally, during National Donate Life Month, we should designate a special recognition event for living organ donors which would serve the dual purpose of highlighting the heroism of living donors as well as raising awareness for this option…from my perspective.

References

  1. http://optn.transplant.hrsa.gov/converge/latestData/advancedData.asp
  2. Chen CL, Cheng YF, Yu CY, Ou HY, Tsang LL, et al. Living donor liver transplantation: the Asian perspective. Transplantation. 2014;97 Suppl 8:S3.
  3. Chen CL, Kabiling CS, Concejero AM. Why does living donor liver transplantation flourish in Asia? Nat Rev Gastroenterol Hepatol. 2013;10:746-51.
  4. Olthoff KM, Abecassis MM, Emond JC, Kam I, Merion RM, et al.  Outcomes of adult living donor liver transplantation: comparison of the Adult-to-adult Living Donor Liver Transplantation Cohort Study and the national experience. Liver Transpl. 2011;17(7):789-97.
  5. Rabin RC. The Reward for Donating a Kidney: No Insurance. New York Times June 11, 2012.
  6. Suh SW, Lee KW, Lee JM, Choi Y, Yi NJ, Suh KS.  Clinical outcomes of and patient satisfaction with different incision methods for donor hepatectomy in living donor liver transplantation. Liver Transpl. 2014. [Epub ahead of print]

1 Comment

  1. 1 Anthony Parr 25 Sep
    Many thanks Doctor Julie. I enjoyed your article very much and again thank you for my living kidney donation in 2013. Your comment about - the core American value that anyone can rise to the top if they just persevere- struck a cord with me as my desire to donate again has never left me.

    If Mayo Clinic ever decides to open the option for people like myself to be considered as double living donors I would love to be considered. My desire to be a living liver donor is strong and to return to Mayo Clinic would be wonderful. I understand if this is not possible but to ask gives me the hope that one day this my be possible.

    Best wishes with your wonderful work in the Transplant field Doctor,my best regards to all at Mayo.

    Anthony Parr
    Australia.

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