What's the score? The Road to Indianapolis

Yeah--this post title sounds like the 2011-2012 season of the NY Giants. It is sooooooo not about the NY Giants. Actually, since they made the Superbowl they made my life a total nightmare potentially. For now, let me get back to the real topic I intended to kvetch about now: our country's liver transplant allocation process.

I'm sure folks are perplexed about why this story is taking place in Indianapolis. Why doesn't Dad just get a liver transplant in Southern California where he lives? How does the liver transplant process work, anyway?

About three years ago Dad was told that his liver was deteriorating and he needed to start thinking about getting on a liver transplant list. How tough can that be, especially since your doctors are telling you that you need a liver transplant? He has good insurance, there is a medical need, and Dad has no other major health conditions or any unhealthy habits (smoking, drinking, drugs, etc). The process is easy, right?  Like so many things in this family, it is far from easy, except in this case Dad is in the same boat as about 16,000 other people. 


http://optn.transplant.hrsa.gov/

In order for someone in the US to be considered for an organ transplant, first they have to have their physician refer them to a transplant center. Three years ago, Dad was referred to UCLA liver transplant center by the local GI in town. If you look on the UCLA liver transplant website (click here for link), it seems like the ideal opportunity for Dad: they have the most active program in the world and handle the more complicated cases. Dad went through the [ridiculously complicated and long] process of getting on the transplant list and was officially listed in the Summer of 2009 at UCLA. Hooray!

http://transplants.ucla.edu/

To be on the liver transplant list, a patient must be placed on the national transplant list. The national list is maintained by United Network for Organ Sharing (UNOS), which is a private, non-profit organization that manages the nation's organ transplant system under federal contract. Activities that UNOS is responsible for include managing the national transplant waiting list, matching donors to recipients, and maintaining the database that contains all organ transplant data for every transplant event in the US.

The matching the donor to recipient process gets interesting, particularly as there is a shortage of livers in this country.

<pause>
While we're on that topic briefly, please become an organ donor if you are not already!!!!

http://judi-mindovermatter.blogspot.com/2011/02/be-organ-donor.html

<end mandatory plug on this post>

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A few fun facts* on the liver shortage in the US and UCLA (compared to IU) before I talk about how liver allocations work:

• There are less than 6,000 liver transplants a year, however 16,000+ people listed for a transplant
• There are ~135 transplant centers in the US that currently perform liver transplants as part of the national system operated by UNOS
• ~43% have to wait for 2+ years on the national waiting list after they are listed (and getting is not a simple process, but I'll save those fabulous details for another time)
• UCLA performed ~200 liver transplants in 2009 and 2010, respectively. For those keeping score, UCLA performs ~3% of all transplants in the entire country--that's pretty impressive.
• Indiana University Health (IU) was closer to 125 liver transplants a year the past couple of years where the data is complete, but still a large number for a single facility
• As of 6/30/2011, there were 640 people waiting for a liver transplant that were listed through UCLA and the median wait time was 37 months 
• IU has 86 people waiting as of 6/30/2011 for a liver transplant and a median wait time of 2 months
• At UCLA, <10% are transplanted with a MELD score range of 15-20 [Dad's current score range]. In fact, >50% are transplanted at a MELD score 31-40 (40 = death) at UCLA
• IU transplants ~45% with a MELD score range of 15-20 and only ~4% at a MELD score range of 31-40

*Sources: Scientific Registry of Transplant Recipients and Organ Procurement and Transplantation Network (OPTN)

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The national transplant allocation system simply cannot operate as a completely national system as the organs need to be transplanted relatively soon after the donor is deceased. Basically, the national system really operates on a regional basis.  There is regional differences in the economics: certain regions have reasonable supply of livers for donation to almost match the demand (such as the Midwest) while other regions do not have anywhere near enough supply to match the demand in that area for organs/livers (such as the Southwest/California).

Within a given transplant center, the MELD score is used to allocate livers along with matching blood type, height, weight, and age. The MELD [Model for End-Stage Liver Disease] score was developed originally at the Mayo Clinic but eventually adopted by UNOS nationally in 2002 for prioritizing allocation of liver transplants within each transplant center. It is supposed to be a scale indicating how ill a patient with liver disease is with the higher scores meaning a sicker patient.

From UNOS:

The Model for End-Stage Liver Disease (MELD) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates age 12 and older. It gives each person a 'score' (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using three routine lab test results:

1. bilirubin, which measures how effectively the liver extretes bile
2. INR (prothrombin time), which measures the liver's ability to make blood clotting factors
3. creatinine, which measures kidney function (Impaired kidney function is often associated with severe liver disease.)





http://www.njlivercare.org/Epidemic/failure/meld/meld.html



Let's cut to the chase after all of that data: Dad has almost died from complications of his liver disease, he has been listed for about 30 months at UCLA, and yet he is still not near the top of the list according to the MELD score criteria and the supply/demand conditions in Southern California. The MELD score does not account for all of the symptoms of his disease that are significant and many are or could be life-threatening: variceal bleeding, hepatic encephalopathy (including coma--the next medical education topic), ascites,  cryoglobulinemia, loss of appetite, and severe itching and subsequent infections. Dad has had a MELD score in the teens for the past 30 months. His MELD score was above 20 last May when he almost died, but he's been around 18-20 the past several months.

Now it was time to evaluate all of the regions that had better supply vs. demand than Southern California. I probably spent a few days scouring data (and even requested a large database of information) and making phone calls. It would have been fantastic if the Northeast (where I and other family members live) worked-out, but they are in the same boat as the Southwestern States with MELD scores generally >30 at transplant.

The South and Midwest are ideal for transplant wait times relative to the other regions. We picked a hospital based on statistics and reputation, however found-out that Dad's insurance would not cover any transplants in that entire state (Florida)--really? Based on the research after that speed bump, we wound-up preparing Dad to get listed Indianapolis. So, that's the long story (and that's the short version!) about why Dad is sitting alone in Indianapolis right now waiting for a liver transplant.

http://surgery.medicine.iu.edu/sections/transplant-surgery/

Recap: UCLA made it clear that he would not be considered for transplant until his MELD score was above 30. That's actually more obvious when you look closely at their statistics and compare to where Dad is sitting with his 'score'. UCLA (and his local GI) also made it clear that he didn't have much longer to live with all of his non-MELD score-captured end-stage liver disease complications. They said he would not live long enough to meet the criteria in Southern California/UCLA to get a liver transplant. Fair? Never! You know how this goes...

My mazel.