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Organ Rationing: Who Lives? Who Dies?

Organ Rationing: Who Lives? Who Dies?

CREATED Dec 13, 2013

NEW YORK, N.Y. (Ivanhoe Newswire) - Today there are more than 119,000 people waiting for organ transplants in the U.S. Only a small fraction of them will get the organs they need. But it's not just how sick you are, it's also where you live can determine whether you get a lifesaving organ or not.

Matthew Rosiello is back in the DJ booth after getting a liver transplant.

Matthew was born with biliary atresia. Bile builds up in the liver and damages the vital organ.

"So, basically I was dying and I didn't even know," Matthew told Ivanhoe.

Matthew was on the transplant list near his home in New York City. Experts say in some metropolitan areas the wait for an organ can be longer. Matthew decided to multi-list and visited two other hospitals, in Connecticut and Ohio.

He got his new liver in Cleveland, but multi-listing can take more time, money, and support from family. It's one reason why some say the system needs to change.

In the United States, there are eleven regions for organ sharing.

"Do I believe that this is the best way to divide the country?  No," Lewis Teperman, MD, Director of Transplantation and Vice Chair of Surgery of New York University, Langone Medical Center, told Ivanhoe.

Rather than state borders, transplant doctor Lew Teperman suggests concentric circles, meaning organs would be shared by a group of states or cities, organized by distance, time, and population—giving more patients more options.

"I'm a prime example of how it can save people's lives," Matthew explained.

On average, 18 people die in the U.S. each day waiting for an organ, but more donors can help prevent that. If you're interested in becoming an organ donor, go to:  http://www.organdonor.gov/index.html. 

RESEARCH SUMMARY

BACKGROUND: Biliary atresia is a blockage in the ducts of the human body that transport bile from the liver to the gallbladder. This happens when ducts inside, or outside, of the liver do not cultivate regularly. The function of the bile ducts is to remove waste from the liver and bring salts to the small intestine to digest fat. Eventually, this may lead to serious liver damage or cirrhosis of the liver. If this condition is not treated in enough time, it may lead to death. (Source:http://www.nlm.nih.gov/medlineplus/ency/article/001145.htm

CAUSES: The cause of biliary atresia is unknown. Most of the time the condition is present at birth and may experience other birth defects. Scientists believe that this is not a hereditary disease and is not passed on from the child's parents. Research suggests that an early viral infection may be associated with biliary atresia. (Source:http://www.liverfoundation.org/abouttheliver/info/biliaryatresia/#Q3)

SYMPTOMS: Symptoms may begin between two to six weeks after birth. Symptoms may include:

ORGAN DONATIONS: Experts say that the organs from one donor can save or help as many as 50 people.  Skin, cornea, internal organs, bone, and bone marrow are all organs that can be donated to another human. When people decide to donate their organs, they typically donate internal organs to family or friends. Most organ and tissue donations occur after the donor has died.  However, some organs and tissues can be donated while the donor is still alive.  There are no limitations on who can donate.  Whether you can donate depends on your physical condition, not age.  Newborns as well as senior citizens have been organ donors.  Non-resident aliens can both donate and receive organs in the U.S.  Organs are given to patients according to medical need, not citizenship.  In 2001, 334 (2.7 percent) of the 12,475 organ donors were non-resident aliens.  In this same year, 259 (one percent) of the 23,998 transplants performed were on non-resident aliens. (Source: http://www.organdonor.gov/faqs.html andhttp://www.nlm.nih.gov/medlineplus/organdonation.html) 

INTERVIEW

Lewis Teperman, MD, Director of Transplantation and Vice Chair of Surgery of New York University, Langone Medical Center, talks about rationing organs.

Can you talk about the process of organ rationing?

Dr. Teperman:  When you don't have enough of a service, you've got to decide what to do.  There are not enough organs around in the United States, so we have to have a system that allocates and in this case organs go to the sickest first. However, there aren't enough organs to satisfy all of the people waiting for transplant, so we have to triage.  So, we've gone to a system that gives priority for the organ to the sickest first.  This interestingly enough does not always give the organ to the patient who is first on the list.  It's not uncommon that the person, for whatever reason, is not medically ready and they decline.  So, it's very important that we know that it goes to the sickest first, but sometimes they are too sick.  So, it often goes down the list. 

Can you explain what you mean by going down the list?

Dr. Teperman: The country is divided into UNOS regions, 11 of them.  I believe that this isn't  best way to divide the country because we are  New York and you go over the GW bridge and there is an organ right there, which is 5 minutes away, and it will not be given to someone who is in New York who is dying. I do not believe that's a good system.  Should there be a different set of regions concentric circles? I believe that would be a better system and it's being worked on.  There is a family with two doctors involved in the field and they are working on new policies to look at different geographic regions.  In fact, they are trying to make it so that it's fairer and the regions are wider, so there is more of a chance that you can get an organ.  We actually share in the state of New York.  All the local areas share equally and so if I am at NYU waiting for an organ and there is an organ up in Albany, we would get the organ up in Albany.  If there is an organ up in Rochester, we'll get the organ there.  Certainly if someone is waiting in Rochester and the first person on the list is in Rochester and the organ is down in New York, the same thing would happen. They would come down and get it down here.  So the entire state of New York would act as one local unit.  It's the only place in the United States that does that. 


I heard a couple of cases of people going to Ohio because you have to be sicker here, you have to wait longer.

Can you help explain why that is?

Dr. Teperman: So, with big metropolitan cities, you have more liver disease.  You have more hepatitis; you have more alcoholism; you have more autoimmune diseases; I mean you have a larger population center.  And because of that you are going to have more people waiting than are actually dying in the particular area.  So, the way the system works is, it goes to the highest on the list.  The list goes from a score of 6, which the low is 0 and goes up to 40. So, we are transplanting in the 30's here or other places are transplanting in the 20's and some even in the teens. 

Can you talk about the MELD score?  

Dr. Teperman: The MELD score stands for the Model of End-Stage Liver Disease and it's a predictor of three months survival (90-day survival).  It says that if the score is higher, your chances of surviving without a transplant are less. The MELD system is thought to be an objective system as opposed to a subjective system where people are writing, "Oh, my patient looks sick. They are encephalopathic. They are confused and they rate that."  That's how the system used to be.  This is a more objective system, but it's still a triage system because we don't have enough organs.  That's why we do living donation in liver transplantation.  It makes up about 50% of renal transplantation, but liver transplantation is much more difficult operation, probably about 5%. 

If they are going to multi list, do they have to have the money to do that?

Dr. Teperman: So, finances or insurance is critical in order to undergo a liver transplant.  For instance, if you are a foreign national and you come to the U.S. and you don't have insurance, there is no way you are going to get a transplant.  However, let's say you are poor and you are on the Medicaid system.  Medicaid is not a transportable insurance policy.  You are bound by the state that gives you that Medicaid. So if you are in New York and you have Medicaid and you are eligible for a transplant, you have to be transplanted in New York.  If you have Medicaid in New Jersey, New Jersey is not going to send the people to New York.  It's a state run insurance program.  Medicare is transportable.  Some of the other insurances, third-party insurances are transportable.  They tend to have centers of excellence and let you only go to where they believe you will be safely treated. Only about 1 to 2% of the patients in the United States actually will get transplanted due to multiple listing.  I usually recommend that there be family members in that state that you can live with. Transplant of the liver is not something that you do today and you leave the hospital tomorrow.  You are going to need to be around that transplant center for at least a month or maybe more while you are waiting, so family members are very important.  I always say go where your family is. 

Does this system frustrate you as a transplant specialist?

Dr. Teperman: Well, I'm saying that we are triaging because we don't have enough organs.  The key is to get enough organs.  Then, whatever you have, will work, but the pie is continually cut up in different regions.  So, we spoke about changing the regional allocation, which would hopefully get some more organs here.  Everyone wants to get more organs, but we believe that the metropolitan cities are not seeing enough of the organs for the number of sick patients that they are taking care of.  Maybe part of the system should be done on how many people are waiting in a particular area, or how sick they are in a particular area.  It's very important that we look at all the possibilities. I think the geographic change is the easy one. 

Is there anything else you would like to add?

Dr. Teperman: They should all sign up at their DMV's.  They should all discuss organ donation because it's a commodity that's a scarce resource.  So, if people knew how important it was, I believe more people would sign up on the lists and there would be more people willing to donate both when they are alive and when they are dead. 
I think a lot of people think that if they have the organ donation symbol on their driver's license, then doctors will do less to save you because they will want your organs. What would you say to them?  
Dr. Teperman: Oh, nothing can be further from the truth.  First off, they almost never look at your wallet.  It usually goes into a plastic bag someplace while they are taking care of you.  They are finding out what's wrong with you.  They are not, except for your name, they are not looking at that and eventually that may be looked at, but it's the last thing.  No one is deferring treatment for someone in emergency room because they think they are going to be an organ donor.  This myth has been around for years and we have to get it out of the common nomenclature.  It's just not true. 

Is it legal to sell your organs? 

Dr. Teperman: It is illegal to sell organs in the U.S.  In fact, there has been more than one siting performed by the FBI.  They try to have a kidney for sale on the internet, on E-Bay.  All the people that bid on it, they get rounded up.  There are some very bad things that go on with selling of organs and attempts to sell organs and certainly, prisoners being used in China, like being on death row, shot, and the organs taken.  So, there are some bad things around organ donation and in the U.S. the law is very clear.  It's an altruistic gift and there is no remuneration allowed.  No financial consideration. 

FOR MORE INFORMATION, PLEASE CONTACT:

Lewis W. Teperman, MD
Associate Professor NYU School of Medicine
Service Chief at NYUHC
Div. Chief Transplant Surgery
Director of Transplant Surgery
Vice Chair Department of Surgery
212-263-8134