Op-Ed: California has long wait lists for liver transplants, but not for the reasons you think

About 7,000 people get a liver transplant each year in the United States, while 17,000 remain on waiting lists at transplant centers. Who should get a lifesaving transplant has always been a complex calculation. But it has blown up into a vicious political struggle that played out most recently at a meeting of the organization governing the nation’s transplant network.

The benefits of liver transplants are astounding. Patients just weeks from death can have their lives extended significantly, even indefinitely. Given the limited number of donor livers, in 2000 Congress established what’s called “the Final Rule” to guide the medical community in how to allocate them fairly. The Final Rule compels the transplant community to allocate donor organs based on best medical judgment, best use of the organs and avoidance of futile transplants. It also notes that a patient’s chance of getting a transplant should not be affected by where he or she lives.

Balancing these various guidelines has always been tricky. But what has emerged — and is now the point of contention — is a marked geographic disparity in how sick a patient must be before rising to the top of a transplant list. For example, waiting lists at California transplant centers are significantly longer (and therefore patients in California get a lot sicker before possibly receiving transplants) compared with waiting lists in Oregon. That’s unfair to the Californians who need liver transplants, right?

Acting on this assumption, the national board of the Organ Procurement and Transplantation Network / United Network for Organ Sharing, or OPTN/UNOS, proposed new boundaries for the nation’s transplant regions. The aim was to have regions with shorter, less-sick waiting lists share the limited supply of donor livers with regions that have longer, more-sick waiting lists. The new map was recently offered for public comment and a regional advisory vote.

Eight of the 11 regions came out against it — because longer waitlists aren’t necessarily a sign of greater need.

The divide is deep. Antagonists have split into camps (“Liver Alliance” versus “Coalition for Organ Distribution Equity”), hired lobbyists and collected their congressional representatives. Given the uproar, it was not surprising that the OPTN/UNOS board of directors declined to vote on the controversial proposal at its national meeting in St. Louis last week. Nevertheleess, there’s a feeling of urgency that something must be done, so it’s entirely possible the board will soon enact the redistribution proposal — perhaps with minor modifications — despite present objections.

Among other complicating factors, it’s understood that transplant lists are longest where standards of living are higher and there is greater access to doctors and specialists (including areas such as California and New York). In states with poorer access to healthcare, such as the Southeast, many sick patients never get on a transplant list. They just die of liver disease.

Would one rather be a patient in a region where one must suffer a long wait and increasing illness before getting a liver transplant — or in a region where just getting on a transplant list might be hard or impossible? Which is truly the disadvantaged area?

Transplant waiting lists also get distorted by intense competition in populous regions where there are more liver transplant centers — a largely ignored issue. With money and prestige at stake, centers are motivated to perform more liver transplants. The simplest way to accomplish that is to put very ill patients on the transplant list, because when a donor organ becomes available, the center with the sickest listed patient in that region gets the organ.

Unfortunately, this encourages centers to list sicker patients over those who have the best chance of long, high-quality lives post-transplant.

Studies have shown that this happens: areas with more transplant centers have a greater number of “risky” patients (those less likely to benefit from liver transplant) on the waiting lists. Knowing that, should donor livers be redistributed to areas where more livers are going to riskier patients?

Rates of organ donation, by the way, do not explain the wait-list problem: California has some of the highest donation rates in the country, while New York persistently ranks at the bottom. Everyone agrees on the need to increase donations — but just redistributing livers will not significantly change the number of transplants or lives saved.

Still, the disparity between the wait lists causes endless teeth-grinding in the transplant community.

There is no question that wait lists are abhorrently long in some places, but OPTN/UNOS’ redistribution proposal misses the larger point: What is it about our transplant system that has created this situation? How can we make changes to keep the wait lists at more reasonable levels?

Matters of healthcare access, while important, are beyond the control of OPTN/UNOS and the transplant community. Within grasp, however, is a simple solution: Lower the number of patients on transplant lists. Such a move would not affect the number of transplants (every available liver would still be transplanted), but it would reduce the delay and degree of illness for those on the wait lists. This is, of course, simple to say, but difficult to implement given how our current system incentivizes transplant centers to get as many patients on their lists as possible.

To create a fairer balance between the haves and have-nots, though, both factions in the liver debate need to understand (and agree on) who the haves and have-nots actually are. Without consensus on that, we risk missing the big picture: increasing the health, happiness and well-being of more people with liver disease.

Dr. Willscott E. Naugler is an associate professor and medical director of liver transplantation at Oregon Health & Science University in Portland. He also serves as the Region 6 (Pacific Northwest) regional representative to the UNOS Liver and Intestine Committee.

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