Transplant Rebirthdays

My kidney transplant was seven years ago today. "Rebirthday" seems to be the most common term the transplant world has for this day, but I've heard "anniversary" and all sorts of permutations that aren't really words I can comprehend ("transplantversary" for one). Transplant patients I know have marked it with recognition of their donors (living or deceased), special activities or indulgences, and even organ-shaped cakes (these tend to be the same ones who have names for their transplanted organ...a bit over the top for those out of early childhood).

For my part, I haven't usually thought of my transplant anniversary as a particularly joyous occasion. At the time, it was an incredibly rough week, and the improvement afterwards wasn't nearly as immediate or dramatic as advertised. Since that time, as each year passes, I'm reminded that the chance of a transplanted organ lasting gets lower. For those interested in numbers, there are good statistics available on current graft and patient survival, projected survival of kidney transplants done recently, and long-term survival of children with end-stage renal disease.

I recently heard a saying about parenting that "the days are long but the years are short" and living with an organ transplant seems to follow the same rule. Taking medications, getting lab tests, and monitoring our health make for long days (and clinic appointments at most places can make for VERY long days!). But whether average graft survival is 10, 20, or even 30 years, it's far less than the 80 year life expectancy most people expect. Each year seems especially short, and they go by fast.

What do I do for my transplant anniversary? Over the years, I've spent this day at everything from a belated holiday party to a cancelled doctor's appointment, and only last year was there a cake involved. I've tried to forget (not possible since I have a fairly good memory for all anniversary days), thought about doing something especially memorable, and graciously accepted well wishes from January 24 to February 2 (the caring is there, but some people's memory for dates is less durable).

In the end, living with a transplant is a day-to-day process, and regardless of the predictions from statistics, no one can predict the future. But having a transplant is a fairly monumental event and change in life, so for that reason alone I'd say that every transplant patient deserves a special day. Enjoy!

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New Allocation Policies

Allocating organs has always been the most contentious issue in the field of transplantation. Which patient should get an organ from the limited supply available has been regulated, debated, modeled, and revisited for as long as transplants have been performed. Historically, fairly simple "point" or "status" systems were used, relying heavily on the judgement of individual physicians and centers and on waiting time. As part of the 2000 Final Rule, the OPTN was charged with creating systems that would rely more heavily on measurable laboratory criteria and place a priority on transplanting the sickest patients first.

The first "modern" allocation system was the MELD (Model for End-Stage Liver Disease) and PELD (Pediatric End-Stage Liver Disease) systems for allocating livers. These are fairly simple systems based on a few variables, with scores that are designed to roughly correlate with the chance of death from liver failure. These systems did provide a degree of objectivity to liver allocation, but their implementation was complicated by the fact that patients with some diseases (such as metabolic diseases and liver cancer) may have a need for transplantation that is not reflected by the variables in MELD/PELD, which are based on cirrhosis. Revisions of the MELD system for patients with hepatocellular carcinoma and a fairly high proportion of "exceptions" from regional review boards (RRBs) for pediatric candidates have been needed, so it's still unclear how fully the system has reached its goals.

A new lung allocation system, based on a simply-named but mathematically-complicated Lung Allocation Score (LAS) went into effect in May 2005. The LAS attempts to predict the one-year survival of candidates without a transplant and with a transplant. Those that have the greatest difference between these scores will presumably have the greatest benefit, and therefore get the greatest priority. The LAS has dozens of variables, which vary based on the disease type, and appears to encompass everything important in organ allocation. Ironically, the most elaborate system currently in place replaces what was previously the most simple--lungs used to be allocated based solely on waiting time, a pure waiting list. Despite its complexity, or maybe because of it, the LAS appears to be very successful, having reduced waiting times and deaths on the waiting list. The New York Times recently chronicled the success of the new system and the failure of the old one.

Kidneys are next. The waiting list for kidney transplantation is by far the largest, accounting for the most patients, the longest waiting times, and the greatest absolute number of deaths while waiting. Each of these is a unique issue for the kidney transplant community, bringing up several questions:

• Should older patients get kidneys from younger donors?
• How should "marginal" kidneys be used to the greatest benefit?
• In a system where the average waiting time approaches four or five years, does a system that gives one person a kidney within one or two years mean that someone else will have to wait nine or ten years?
• How should racial and ethnic disparities be limited?

These issues were covered in a New Year's Day front page story in the San Francisco Chronicle, and in a much more personal documentary by the Los Angeles Times.

It appears that a new kidney allocation system will resemble the lung system, calculating a "Net Lifetime Survival Benefit" for transplantation. Some of the current thinking of policymakers is reviewed on the UNOS Kidney Transplantation Committee web site. UNOS will also be holding a Public Forum on the revisions of the kidney allocation system, looking to inform and seek input from patients in the kidney transplant community. Clearly, this issue is a vital one in transplantation today and in the future.

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Misty Cargill

NPR recently told the story of Misty Cargill, a 25-year-old woman in Oklahoma who will soon need a kidney transplant, but was rejected by Oklahoma University Medical Center's transplant program as a candidate. The most notable part of her story is that Misty also has mental retardation and lives in a group home. The biggest concern brought up is discrimination, which in this form should have no place in any transplant program. This concern prompted a Christmas Day editorial by Timothy Shriver, chairman of the Special Olympics, in the Washington Post.

The medical perspective appears straightforward--Misty has a condition that will lead to end-stage renal disease, and appears to be in good enough overall health to undergo and live with a kidney transplant. We don't know this firsthand, but it's been reported widely and not disupted by any party.

The legal perspective is a conundrum. The hospital said in a statement that the reason they won't list her for a transplant is that they don't believe she's capable of making her own decisions and giving informed consent. But the county department of Adult Protective Services refused to assume guardianship, stating that she is capable of making her own decisions and giving informed consent.

The ethical perspective is worrisome. Not being inside this case or the process, I have no way to judge Misty Cargill's suitability for a kidney transplant. But from the outside, there's a young woman who appears to be a suitable transplant candidate and is being met with rejection, allegations, curt and carefully prepared statements, evasive and illogical responses, and hurdles and brick walls. Not the kinds of things that would make the average person confident in the trustworthiness of the system, the process, or the institutions and individuals involved.

This issue has come up before, in more extreme circumstances. In 1995, Sandra Jensen was denied evaluation for a heart-lung transplant by UCSD and Stanford, solely on the basis of low IQ. Her landmark case prompted intense reactions from Down syndrome advocates, and she was eventually evaluated and transplanted. Perhaps the best message to come out of it was the statement of the medical director of Stanford's lung transplant program: "We rejected her out of hand, based on a label. That was wrong, and I'm willing to admit that." A similar statement ten years later would be just as powerful.

While no one should hold their breath for such a statement, there have been more recent reports about this story. Misty's local paper, The Duncan Banner, reported on her initial reaction to the NPR story. A more recent report has even more information, most of it positive. Another transplant center has offered to evaluate Misty, offers have come for lawyers or picketers (hey, this is America!), and two strangers and four relatives have volunteered to be evaluated as kidney donors.

Ultimately, Misty Cargill's vulnerability to the transplant system is not that unique. Even if someone's IQ is 146 (double of Misty's 73), would they want to be under the care of the center in question? They'll be just as unconscious during the surgery, almost as dependent on the professionals at the transplant program for advice and guidance, and could suffer just as much from any misjudgements on their part. My hope for her, like all transplant patients, is that she gets the best care possible and the full support of the transplant community and those around her to lead a healthy life.

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Quality of care and oversight

Happy New Year and welcome to Transplant Headquarters! For the first post of 2007, I wanted to highlight some of the biggest news stories in transplantation from 2006.

In June, the Los Angeles Times reported that 20% of US transplant programs receiving federal funding didn't meet CMS (Medicare) standards for volume, outcome, or both, and calculated that these programs accounted for 21 more deaths among transplant patients than statistically expected. Since CMS only sets standards for some of the organs transplanted (heart, lung, and liver), and not all transplant centers are CMS-certified, the actual number of "substandard centers" may be underestimated.

The LA Times also published a list of the substandard programs. More than the 20% figure in the first article, this list is even more surprising given some of the institutions on the list: Mass General, Johns Hopkins, Yale, University of Miami/Jackson Memorial, Mount Sinai, Medical College of Virginia, and other similarly prominent hospitals and transplant centers.

In October, the LA Times turned its attention to UNOS, the private organization under contract from the US government to run the national organ allocation system. This article focused not only on centers not meeting quality of care standards, but also the UNOS response (or lack of response) to programs that had violated UNOS policies in the recent past. This article prompted a response from UNOS, explaining its approach and defending its performance to date.

These pieces include all the buzzwords you could ask for:

• "glaring and repeated lapses"
• "continued artificial bolstering of programs that shouldn't exist"
• "mortality increased sharply and exponentially"
• "derelict hospitals"
• "sense of outrage"
• "fox guarding the chicken house"
• "stuck to its slow and silent ways"

from the LA Times, and from the UNOS side:

• "best interest of patients"
• "patients' access to transplant"
• "public trust is essential"

On one hand, the fact that this story can be reported at all is a testament to the strong regulation of transplantation in the United States, where every "transplant event" (every patient listed, every deceased and living organ donation, and every transplant operation) is recorded. On the other hand, it seems like this information isn't being used to the fullest benefit possible. As for how much "policing" should be done by the government or UNOS, and how much professional autonomy should be allowed for transplant programs, I don't know. What I do know is that, as a transplant patient, I'm glad this information is out there.

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