My author website to read about and purchase Saved by a Stranger: Life-Changing Journeys of Transplant Patients is www.lezlee.com

***AS A RESULT OF THIS PETITION, UNOS ENACTED AN IMPORTANT POLICY THAT MAKES IT LESS RESTRICTIVE FOR PSC PATIENTS TO RECEIVE EXCEPTION POINTS. 

Now we must continue to engage in public comment with the United Network of Organ Sharing (UNOS).
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HERE IS THE ORIGINAL PETITION BELOW:

CHANGING POLICY within UNOS (United Network of Organ Sharing)
Adding Exception Points to MELD Scores for PSC and PBC Liver Transplant Wait List Patients:

I know this is a lot of information to digest, but unless you fully understand these terms, you cannot appreciate the challenges we are facing.  

**THANK YOU FOR SIGNING AND COMMENTING.  It is making a difference! UNOS has already said that they take Public Comment into consideration when making policy changes so. OUR VOICES MATTER! 

We are just one story.  We are one example of how the imperfect MELD score for determining who gets a liver or not is negatively affecting our waitlist time for a liver transplant. The longer the wait time, the greater the risk. You want a patient to be as healthy as possible going into a major transplant surgery for the best outcomes, before they develop life-threatening complications.  We are fighting for all patients with my husband's rare disease whose scores do not reflect how sick they truly are.
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First, let me ask you.  Are you an organ donor? Just look on your driver's license. If not, please click Donor Registry.   We have a major shortage of viable donors.

**FYI - by agreeing to be an organ donor, the chances you actually will be one day are very slim. There are a lot of unfounded myths that need to be dispelled. No one is coming down and "swooping your organs" or "not trying save you" in an accident if that were to happen. That is completely false!

WITHOUT DONORS, NONE OF THIS WOULD EVEN BE POSSIBLE!
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Our Background (edited since the inception of this petition): My husband, Capt. Rob, was very sick with an autoimmune disorder called PSC (Primary Sclerosing Cholangitis) and needed a liver transplant. Basically, the bile ducts within the liver become scarred over time leading to cirrhosis.

We are from Nyack, NY.  Rob was on the transplant list for two years at Montefiore Hospital in the Bronx and then he temporarily moved to Florida in October 2019 to be near the Mayo Clinic in Jacksonville where his chances of getting transplanted were greater. When Covid-19 hit New York in March 2019, I came down here with our two children (ages 15yrs and 11yrs old).

While we were at Montefiore, we explored having a Living Donor which is a HUGE thing to ask someone. The surgery involves a healthy person donating 50% of their own liver, which replaces a sick person's whole liver, both of which regenerate to a whole size liver again. Yes, livers grow! The evaluation process is very strict and our potential donor matched but ultimately was not accepted, we think because he had PTSD from serving in the army during the Iraq War. Knowing the risks, a transplant center will not do anything they feel will jeapardize the health (both mental and physical) of the potential donor or recipient. This set us back psychologically and emotionally. 

Around the same time, last Fall, we went to Jacksonville, FL and Rob was accepted into the renowned Mayo Clinic's Transplant Program. They do not do Living Donors at Mayo Jacksonville (only Rochester) and one of the surgeons explained that Living Donor surgeries are more complicated because you are attaching much smaller vessels. At the time, the deceased donor pool in Florida was greater and Mayo Jax did not have as much competition for organs so Rob's chances of getting a deceased liver were greater in Florida than in New York. We were told the average wait time was 6 months to a year. He waited 11 months in Jacksonville and was finally transplanted on September 10, 2020 (just 5 weeks after I started this petition)! While I do not think this petition was the reason he was transplanted, I do know that bringing up this issue has put pressure on UNOS to really investigate the MELD score system and how it relates to PSC and PBC. 

People will always ask me.  Where is Rob on the list? I never really knew how to answer that.  The list is always changing. It is based on blood type, body mass, and, with livers, your MELD score. You will learn about MELD scores and UNOS down below.
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What is UNOS?
UNOS (stands for (United Network of Organ Sharing).  It is a very important non profit organization that reports to the OPTN (Organ Procurement Transplant Network) operated under contract with the U.S. Dept. of Health and Human Services.  UNOS helped coordinate 39,718 transplants in 2019. The organization:
- increases public awareness of the need for donated organs and tissues
- maintains the national organ transplant waiting list
- coordinates the matching and distribution of donated organs
- collects and reports data on transplant recipients, donors and outcomes
- serves as a forum to create and define organ sharing policies that maximize the use of donated organs
- establishes transplant physician and surgeon training and experience criteria
- produces professional education tools
- provides extensive information about organ transplantation

Approximately 30,000 Americans are living with a rare but incurable autoimmune liver disease more common in men called Primary Sclerosing Cholangitis (PSC) and another 22,000 with a similar disease more common in women called Primary Biliary Cholangitis (PBC), both of which lead to liver failure. There is no known cause or cure. These bile duct diseases are progressive, and patients can slowly deteriorate for 15-20 years going into cirrhosis before needing a liver transplant.

Symptoms (like all liver disease) include extreme fatigue, yellowing of skin and eyes (jaundice), muscle wasting, extreme itching (pruritus), fluid in the stomach (ascites), swollen veins in the esophagus (esophageal varicies) and even mental confusion (encephalopathy). PSC and PBC represent a very small portion of liver diseases, the most common being Non-Alcoholic Fatty Liver Disease and Alcoholism, both of which can affect the kidney function.

What is a MELD Score? In the liver transplant arena, the word “MELD” has everything to do with how quickly you get a liver transplant. MELD stands for Model End-Stage Liver Disease (PELD for children under 12).  The higher the score, the “sicker” you are and statistically closer to death without a transplant.  A MELD score is a number that ranges from 6 to 40, based on blood lab tests. The score looks at: 1. Creatinine Levels (Kidney function) 2. Bilirubin (how liver is clearing out bile 3. INR (blood clotting function) 4. Serum Sodium (also related to kidneys). 

One of the problems with MELD score for PSC patients is that half of the score is kidney function and while many times their liver counts are high, unless PSC patients have fluid in the belly, their kidneys are often fine until serious complications and their scores are often lower. Furthermore, the psychological effects of knowing you have a ticking time bomb inside you for nothing you did or didn't do deserves "MELD compensation."  Perhaps Bilirubin levels need to be taken more into consideration with this disease and waitlist time. 

If you know you will need a transplant, you better make sure your health insurance covers the transplant center of your choice and you have the funds and support system to do this. Many plans limit you to the state you are in and do NOT compensate for travel or relocation costs which breaks many families financially. I have heard stories of people waiting for an organ transplant who switched health insurance policies and it stopped the process completely. This is a whole other conversation. What is the cost of your life?
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Recent UNOS Policy Changes and their Effect:

I started this petition because I finally realized that Rob, like many other people with PSC, continued to be "stuck in MELD score Purgatory."  Now that UNOS has enacted another policy called "Acuity Circle" which went into affect this February, 2020, it has completely changed the allocation of deceased donor organs.  We were a perfect example of being caught in the middle of a policy change which highlights the already "imperfect" but way too heavily emphasized scoring system that determines who gets an organ before someone else. The change will beneft some and hurt others, but the overall goal of UNOS is to make organ transplantation as fair as possible.

Up until recently, if someone died near a particular hospital that had a Transplant Center, the closest Transplant Centers would get the first offers for organs because it was divided by regions of the country. Because of its location, Mayo Jacksonville  did not need to push for Living Donation surgeries because there were plenty more deceased donor organ opprtunities available. That is why so many people like us were moving from cities with dense populations/low donor pools to places like Florida "where the waitlist was shorter" because the average MELD score was also lower. 

Now, because of the new acuity circle, donor offers are based on transplant centers within concentric circles from where the donor has been declared "legally brain dead" within 150, 250, or 500 nautical miles from the donor.  There were actually LAWSUITS over this change because centers in the South knew this would negatively affect them. While this widens the net, it also makes the MELD score even more important. Suddenly, there are more people fighting for the same organs so the ones with a higher score are given "first dibs" which means SCORE matters MORE.  For a complete explanation, please click on Liver Policy.  

Like many PSCers, Rob is unable to get higher up on the list because the scoring system does not take into account the length of time you are suffering from a disease or any negative quality of life issues (like muscle mass wasting, swolen veins that could burst in the esophagus, jaundice, extreme fatigue, itching from bile buildup, etc.) that do not directly relate to immediate impending mortality of the patient on the transplant list. 

In an effort to make things fair, it actually is LESS fair to people like Rob whose score did not reflect how sick they really are.  While the new Acuity Circle was enacted, the reasons that doctors can ask UNOS for "exception points" to MELD scores also became more strict. Now, the only way for doctors to get approval for more points is if the patient develops a cancer or is hopitalized twice in three months with a life threatening bacterial infection.  What?!!  We asked our hepatologist to request exception points but were denied. After feeling really discouraged, I wanted to be pro-active and productive. 

Rob's MELD score was not getting higher and he could not receive exception points on his score without getting deathly ill with sepsis or cancer.  At the same time, because of the new acuity circle changes, the average MELD score for transplant is being more affected. This was the whole reason we came down to Florida was to avoid becoming severely compromised before transplant.  

MELD measures "mortality" not "morbidity."  While we were in Florida, he had two offers for transplant, which does kept us hopeful. Both livers were considered "high risk" Hep C livers. Unfortunately, once the high risk organ was actually in the hands and inspected by the transplant surgeons, they were not happy with the quality of the liver, so the surgery was called off. Twice.

What continued to keep him "lower on the list" from receiving his transplant was his MELD score. After talking to so many other people with PSC, I KNOW the system is not perfect and needs to change immediately.  Since being in Florida, my husband became more jaundice, fatigued, lost a tremendous amount of weight and muscle mass, experienced uncontrollable itching, and had swollen veins in the esophagus which could have burst and killed him had they not been banded, yet his score actually went down!   His score stayed at 19 even though his symptoms became worse. The average MELD for transplant has now gone up from 24 to 27 making it even harder for him.  So, I started to ask WHY?

Why does the MELD score not work for people with PSC and related PBC? What is different about this disease? Why do PSC patients and anyone for that matter have to become deathly ill in order to move up the list and get a transplant? Don't you want them to be as healthy as possible going into this major surgery? Once I asked these questions, I became outraged the system is actually working against my husband who has waited and suffered from this disease both psychologically and physically for 18 years. 

Currently, there is no separation or differentiation among the different liver diseases. After basic matches occur, it boils down to MELD score, and PSC patients continue to stay in a holding pattern unable to get higher on the list without major complications. This is unacceptable.

What happens when the MELD score does not adequately reflect how "sick" you are? This is a big dilemma because the objective definition of "sick" is how close you are to death without an organ transplant. We understand that MELD is objective, but we feel the scoring system should be amended to give PSC/PBC exception points.  You want people to go into a transplant surgery as healthy as possible for the best outcome. Putting them in a more compromised position is not fair. 

We understand that UNOS regulates the Organ Transplant system with the goal of saving lives equitably. But we feel that PSC and PBC patients deserve a break because not all liver diseases are the same or fit within the same mold. We are more than just a score. The main problem is a shortage of viable donors so now, it comes down to points.  One or two points could be the difference between life or death. 

WHAT CAN YOU DO?
1. If this affects you personally or you know someone who this is affecting, please write a PUBLIC COMMENT to the existing UNOS policy change on this website ASAP. UNOS Policy Change - Public Comment

2. Please sign this petition and comment as well!

Here is what we are asking for below. We are NOT asking anyone for money even if this website does. Input matters. 

UNOS - Please consider giving a small number of exception points added to the MELD scores of people suffering from late stage PSC and PBC for the disease itself OR take the median regional MELD score and reduce it slightly for PSC/PBC so they can more quickly receive their life saving liver transplant before going into a more potentially fatal situation which could cause complications during transplant surgery. 

One more time.  Are you an organ donor? Please Register Here to Be a Donor.   

Thank you! - Lezlee and Capt. Rob

PLEASE VISIT OUR MAIN WEBSITE www.organtransplants.info
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