Apple CEO Steve Jobs' liver transplant in Tennessee rekindles questions about fairness of US organ allocation system.

JimWarren

Editor & Publisher

"Tell me the truth. Did he--Steve Jobs--jump the line to get his liver transplant?" Question to me at small cocktail party in Washington, DC area after I told him what I did for a living. Jim Warren, Editor & Publisher, Transplant News

"Those who travel out of state must be evaluated at the new hospital, but there is no prohibition to being on the wait list at more than one transplant center." Job's Transplant Highlights Differing Wait Times, June 20, 2009 written by Laura Meckler, Wall Street Journal reporter.

When the Los Angeles Times broke the news last month that Steve Jobs, the chief executive of Apple, Inc., had received a liver transplant in April at the Methodist Transplant Institute in Memphis, TN, the news rekindled a the decades old debate over the fairness of the live allocation system in the US. Jobs getting transplanted in Memphis broke no national laws and did not prevent any more deserving candidate from receiving a life-saving transplant. It did, however, lead to two Times technology writers to question whether Apple's silence on Job's health may have broken "federal securities rules" which may have impacted "what a reasonable investor would need to know to make an informed decision on buying or selling stock." (The investment community seemed to be split on that issue).

The national coverage prompted several responses from the transplant community explaining how the national liver allocation system operates. Here are statements from three different perspectives--The Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS), Ochsner Medical Center in New Orleans, LA, and Tom Mone, CEO, OneLegacy, the organ procurement organization covering the Los Angeles, CA area.

OPTN/UNOS Statement

Recent news regarding liver transplantation has raised public questions regarding how donated livers are allocated and potential variation in transplant waiting times. The national Organ Procurement and Transplantation Network (OPTN),operated by the United Network for Organ Sharing (UNOS) under federal contract, cannot discuss details of individual transplant candidates subject to federal laws and regulations regarding patient confidentiality. The OPTN can address general questions about policy and process.

Whenever a person known to the public receives a transplant, it is tempting to compare that person's waiting time to national averages. Any comparison of one person's experience to that of thousands of others can be misleading.

Liver waiting time is greatly influenced by a formula that assigns priority for organ offers based on the candidate's risk of dying within three months without a transplant. For candidates 12 or older, this formula is called a MELD score. (Younger candidates are prioritized by a companion system known as PELD).

MELD uses objective calculations of common laboratory tests of liver and kidney function. MELD scores can range from 6 (least urgent) to 40 (most urgent); candidates with a 15 or higher are at considerable risk of dying in the short term without a transplant.

OPTN policy prioritizes liver candidates local to the organ donor with a MELD or PELD score of 15 or higher, than those candidates within the region of the donor who have scores 15 or higher, before any less urgent candidates may be considered.

Of candidates listed in the United States with an initial MELD or PELD score between19 and 24, half receive a liver transplant within approximately 15 weeks of being listed. Of those listed with an initial MELD or PELD score of 25 or higher, half receive a transplant within 20 days of listing. Candidates with lower Meld/PELD priority may often wait months to years for a transplant opportunity.

Other factors may further affect waiting time, such as whether the candidate is generally compatible or incompatible with many donor offers based on blood type or body size. Waiting time in a given local area may reflect particular characteristics in that area's recipient population not common to other areas. The national allocation system cannot and does not make any distinction of candidate priority based on wealth, celebrity or other purely social characteristics.

In recent years, approximately 6,500 liver transplants have been performed annually in the United States. Today more than 15,000 men, women and children continue to await this lifesaving gift. We hope the current attention generated by news reports will remind the public of the continuing need of all transplant candidates, and of the opportunity to end their wait through making a positive commitment to organ donation.

Letter to Laura Meckler, WSJ from Tom Mone, CEO, OneLegacy "We in the organ donation field are leery of stories of celebrities receiving transplants, because they are so often misinterpreted as demonstrating the power of celebrity allowing violation of organ allocation policies, when these transplants are in fact in line with those policies but attention grabbers nonetheless. Your discussion of Mr. Jobs' case is an exception to the norm as you immediately made clear that the rules were followed, but raised the question of whether the rules are as fair and effective as they could be.

Here in California, our transplant centers currently have 20% of the national waiting list candidates for organs, yes less than 10% of the national deaths occur in the state and we are thus able to recover only 12% of the nationwide eligible donors. The US organ allocation system, that is so inextricably bound to the local donor service area (DSA) allocation first then regional prior to national, ensures that waiting recipients in areas like ours with such an imbalance are doomed to have longer waits and many more deaths while on the waitlist. And California is not alone in facing this challenge. Several weeks ago at the American Transplant Congress, a presentation was made on the dramatic variation in death rates by state, from the macro level down to deaths in ICUs due to diagnoses that could allow transplantation (Sheehy, et.al). This study showed a three-fold variation by state in such death rates which illustrates the fundamental challenge of equity in distribution of organs across the country.

Given this demographically driven challenge, the simple solution of national distribution has been repeatedly proposed, but is always shot down due to the very real detrimental effects of cold ischemic time (CIT) on organs that are shipped great distances. However, research of CIT has shown that livers can routinely withstand substantially more CIT than the average liver transplanted in the US without significant functional degradation, yet most livers are transplanted within local DSAs where transportation time is usually one to two hours.

It is reasonable to suggest that liver allocation be based on some other criteria than local DSA, some of which are a few hundred square miles while others cover hundreds of thousands of square miles, and some have very high rates of liver failure in their populations while others have dramatically less. Ultimately, the combination of high disease rates and low death rates combine to create "MELD at transplant" score variances across the country that vary from the very low 15-20 at some centers in Tennessee, where Mr. Jobs received his transplant, to the very high 35-40 at some in California, where Mr. Jobs resides.

Heart and lung allocation rules have incorporated "Zones" that are geographically based, and while not entirely independent of DSA-based allocation, ensure greater utilization and more importantly greater consistency in allocation and transplantation. Use of such a system that allocated livers across a zone that enabled transplant within 6-10 hours rather than across town would not end the national imbalance, but it would reduce it measurably. Undoubtedly, such a change would inevitably benefit the activity levels of some transplant programs while reducing others, with those negatively impacted being the programs that transplant less ill patients while sicker patients are dying elsewhere.

Such a zone-based system of liver allocation would ultimately ensure that the sickest are transplanted, that those who cannot afford to be listed in multiple centers and travel for transplant have a better shot at an organ, and that fewer will die on the waitlist; three substantial unintended benefits that could result from the public discussion of Mr. Jobs' transplant."

New Orleans Ochsner Medical Center statement on Steve Jobs liver transplant It's a little known fact that California resident and Founder/CEO of Apple, Inc., Steve Jobs, has brought to light: patients in need of transplants can be added to waiting lists in other states. New Orleans-based Ochsner Medical Center, which has some of the nation's shortest waiting times and highest success rates, encourages patients nationwide to research their options when in need of an organ transplant.

Jobs reportedly underwent liver transplant surgery in Tennessee, over 2,000 miles from his California home, showcasing that residency is not contingent upon joining multiple, organ transplant waiting lists in other states. "Many patients don't realize they can be listed in several programs simultaneously and increase their chances of transplant, if they're listed in different regions of the US," explained George Loss, MD, transplant surgeon and Chief of Ochsner's Multi-Organ Transplant Institute in New Orleans.

According to the United Network for Organ Sharing (UNOS), who manages the distribution of organs in the US, there is no residency requirement for transplant patients. "On average, Ochsner's liver transplantation patients are made up of 60% of Louisiana residents and 40% out-of-state residents," Loss said. Oschner's median wait time for a liver transplant is 60 days and the one-year survival rate is 93.5% (national survival rate is 88%).

"As more patients become aware of their ability to travel to receive a transplant, we hope the outcome will be additional lives saved and renewed awareness of the gift of life, encouraging people to sign up to become organ donors," Loss added. The important step an individual needs to take in order to become an organ donor is to make their wishes known.

In January 2008, Ochsner experienced its busiest month since the transplant program began in 1984, performing 30 operations in 30 days: 16 livers, 11 kidneys, 2 pancreases, and 1 heart transplant. "This marked increase over January 2008 can be attributed to a rise in organ donation awareness in Louisiana," Loss said.