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Thursday, August 22, 2013

Here Comes the Judge - Part 1

By now, most of us have heard Sarah Murnaghan's story. She is the 10-year-old girl from Pennsylvania who received national attention when her parents filed a lawsuit in order to get her a double-lung transplant. Suffering from the horrible disease of cystic fibrosis, Sarah was running out of time quickly and her only hope for survival was a lung transplant, which she received and is now recovering from.

Sarah's story is one I've been following since it began developing in early summer / late spring. It is also a story that as an organ transplant recipient, I felt compelled to weigh in on at some point. However, I chose to wait awhile in order to see how the story progressed. Yesterday was the 6 1/2 year anniversary of my heart transplant. Today, I give my 2 cents .... or, whatever it's worth.

Heart and Lungs
Heart and Lungs (Photo credit: Wikipedia)
In case any of my readers are unfamiliar with Sarah's story, I lay it out below.

As I mentioned, Sarah is a 10-year-old girl who suffered from cystic fibrosis. She was deathly ill and had been on the transplant list for an extended period of time. I think I saw somewhere that it was 18 months. One reason her wait was so lengthy is because she is under 12.

Through the years, UNOS (United Network for Organ Sharing) and OPTN (Organ Procurement and Transplantation Network) along with other medical and transplant experts have studied, researched, and compiled data in order to put rules, regulations, and procedures in place to administer and regulate the U.S.'s transplant system. One of the goals of that system is to be fair to all and help transplant recipients have the best outcomes.

One of those rules is that a person under 12 years of age is placed on the pediatric lung transplant waiting list in order to receive lungs from a child. If a person is 12 or more, they qualify for the adult lung transplant waiting list. The main reason for the different lists is because size matters. Adult lungs are generally too large for a child. Being on the adult transplant list might have shortened Sarah's wait, since adult lungs become available more often than pediatric ones, but there are no guarantees. The problem for her was that pediatric lung transplants are rare, because donor lungs from a child seldom become available.

Sarah was running out of time, so an appeal was made to Kathleen Sebelius, Secretary of the U.S. Department of Health and Human Services, to make an exception for Sarah and place her on the adult lung transplant waiting list to improve her chances of getting a set of lungs. Sebelius wanted to help and even acknowledged that the rules concerning pediatric and adult lung transplants should be reviewed and given further study. However, she said it was not her place to alter the current rules and make an exception for one individual.

Sarah's parents then sued claiming that their daughter was being discriminated against because of her age. They wanted a judge to order Sebelius to place Sarah on the adult lung transplant list. The judge hearing the case agreed with them, and on June 12th, Sarah had a lung transplant. However, the story does not end there.

Shortly after the transplant, Sarah's new lungs failed. It's not an uncommon occurrence. It happens in as many as 25% of lung transplants. Then, on June 15th, another set of lungs became available, so Sarah had another lung transplant. The only problem was that the donor of those lungs had pneumonia, which brought a whole new set of problems into the mix. However, her parents chose to accept them, because Sarah would die otherwise.

English: A very prominent pneumonia of the mid...
English: A very prominent pneumonia of the middle lobe of the right lung. (Photo credit: Wikipedia)
After the second transplant, Sarah's problems did not cease. Besides the battle with the pneumonia, she would need another surgery to repair a partially paralyzed diaphragm. As someone who has had pneumonia once, I cannot imagine the suffering Sarah has gone through. First, two lung transplants. Then, pneumonia coupled with a malfunctioning diaphragm. It's hard enough to breathe with just pneumonia working against you, but with a bad diaphragm, also, while recovering from a double-lung transplant - it sounds horrible.

Sarah's story has sparked national debate about the whole donated organ process, as it should. The controversy coupled with all the raw emotion the debate has brought with it is the main reason I've held off weighing in until now. But as I said, as a heart transplant recipient, I feel I must. I've been in Sarah's shoes. My family has been in Sarah's family's shoes. It is not a good place to be, and it's why I continue to advocate for more Americans to register as organ and tissue donors every chance I get.

Before I get too far into "my 2 cents," let me say two things. First, I think Sarah's parents did the same thing any parent would in those circumstances - fight for their child and do whatever it takes to help them. Sarah's their baby. They love her and would do anything to protect her, just like any other parent. They did what they had to do, and I don't think anyone can blame them for that.

Second, I am happy for Sarah. To her, I say welcome to the "Transplant Recipient Club." I would also say to her that she should not expect the journey to always be easy. There will be bumps in the road. However, every extra minute spent with her family and doing the things she loves will be worth it. Trust me. I have over 2300 days of experience under my belt. Those days are priceless.

All that being said, this story makes me a little uneasy and concerns me greatly. It goes down a slippery slope and opens a can of worms that I'm not sure we as Americans really want open. I see "DANGER AHEAD" signs flashing for a number of reasons.

First, I do not think a federal judge should have stepped in, overruled the rules for one individual, and "forced" Sarah onto the adult transplant list. The age rules set forth years ago regarding the lung transplant waiting list were put in place after years of research, study, and analyzing the outcomes of both adult and pediatric lung transplants. These rules were put in place by transplant medical experts in order to assure that the sickest patients had the best possible outcomes per transplant. They should not have been overruled on the emotional whim of a judge. It was an overstep. Rules are put in place for a reason - to prevent chaos and ensure that everyone is treated fairly.

Official portrait of United States Health and ...
Official portrait of United States Health and Human Services Secretary . (Photo credit: Wikipedia)
While I am not a big fan of Secretary Sebelius, I would like to commend her in this situation. She followed the rules and was not willing to change them without further research, data, and a discussion with the medical professionals who put the rules in place to begin with. At a time when the Obama Administration seems to break or change the rules daily, it is nice to see her following them in this case. Thank you, Madam Secretary.

Second, the judge's ruling sets a dangerous, dangerous precedent. When I heard of the decision. my first thought was, "I wonder how long it will be before another child's parents do the exact same thing?" Sure enough - I was right. I heard just a few days later of another such case where a judge overruled the transplant guidelines. Welcome to chaos.

Third, my opposition to ObamaCare is no secret. I have preached against it now for what seems like an eternity. While Sarah's case has absolutely nothing to do with ObamaCare, it shares something with that piece-of-crap legislation - bureaucrats making healthcare decisions instead of medical professionals. The federal judge's ruling in this case opens the transplant process up to corruption.

For instance, let's say, hypothetically, that a federal judge's golfing buddy is in need of a life-saving liver transplant. Let's say you need one, too, are sicker than him, just days away from death, and at the top of the list. You get the call that a liver is available for you. Unbeknownst to you, that liver is a match for both of you. You've followed all the rules and are first in line. It's yours. Then, all of a sudden, the judge's golfing buddy's wife files a lawsuit in order to get the golf buddy that liver instead of you. The case just happens to come before this judge. Think the judge will recuse himself? Are you sure?

Let's say the judge does not recuse himself and rules in favor of giving the golf buddy that liver you should have had. How would you feel? Is that fair? What if that liver was the only opportunity you would get at a transplant, you don't get it, and die? Don't think it could happen? Why not? The judge that ruled in favor of Sarah Murnaghan set the precedent for it. Precedence is a dangerous thing. Such a ruling leads to chaos and a lack of faith in the system. The scariest thing to me as a heart recipient is that I could see it having a negative effect on getting people to register as donors. Why would they if integrity is removed from the system through judges bending the rules on a whim? Scary ... just scary. It could cost people their lives.

Fourth, the one thing that hasn't been discussed in this whole situation is the fact that it's likely that by the judge placing Sarah on the adult lung transplant list, and her receiving two sets of adult lungs, two adults on the adult list, who had played by the rules, didn't get the life-saving lung transplants they desperately needed. What if they died because of it? Was that fair? It's a very serious, potential reality that should not be overlooked.

I hope no one reads this post and thinks I've got a problem with this little girl and her parents, because I do not. I do not blame any of them at all for doing whatever it took to save Sarah's life. They didn't do anything anyone else wouldn't have done in the same situation. The only person I find fault with in this situation is the federal judge who overstepped and made a decision that should have been reserved for the medical community. In my opinion, the ruling is scary and puts the entire field of medicine in jeopardy, not just transplant. A judge's job is to ensure that "the law," or the rules in this instance, are followed and applied to each person equally. This judge did not do that.

Here's something to think about. Do you know what the root cause is as of why we are even having this debate? It's not parents fighting for their daughter's life. It's not because of an improper decision by a judge. All of those things were set in motion by the fact that too few Americans have chosen to be organ and tissue donors. Whether we want to admit it or not, the lack of donated organs has led to a form of rationing. If every American would register as an organ and tissue donor, we would not have any "Sarah Murnaghan Stories" and lobbying and filing lawsuits to get so-and-so's loved one a transplant.

Today, August 22, 2013, about 19 Americans, out of the 119,000 on the transplant waiting list, will die a needless death due to a lack of organ donors. Those Americans have spouses, children, golfing buddies, and other people close to them who will mourn their passing and miss them terribly. The big thing we should all learn from the Sarah Murnaghan story is that the lack of organ donors in this country is an ... "epidemic." And yes, I used the "e-word," because, in my opinion, it's that serious.

The good news is that this epidemic has a simple cure. If all of us will register as organ and tissue donors, the shortage of donated organs will end immediately. The epidemic of 19 American men, women, and children dying every single day while waiting on a transplant would be history. The solution is so, so simple. Registering as an organ and tissue donor doesn't cost you anything and only takes a few minutes of your time. Isn't a few minutes of your time a worthwhile investment if it means someone might live ?

Please help by being part of the solution. Register as an organ and tissue donor today by clicking here. Show that you care about your fellow Americans by REGISTERING NOW.

P.S. Next week, in Part 2, I'll share another story of a transplant-related legal battle. This one is truly sad.

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2 comments:

my2ndheartbeat said...

Sheep,

In my humble opinion, this a GREAT post and I'd like to have your permission to re-post it on my blog (http://my2ndheartbeat.wordpress.com )

Additionally, I watched the story in Atlanta (Children's Healthcare) the past couple weeks, with the 15 year old boy that was initially denied being added to the UNOS list due to previous non-compliance issues.

The Dr's changed their minds and he was added to the UNOS list and subsequently transplanted this week. It, in my opinion, appeared media pressure worked in this case. The hospitals are at a disadvantage when these issues are debated in the press, because they are restricted by HIPAA laws and cannot site the specific examples of said, non-compliance.

Regardless, GREAT post!!

The Second Chance Sheepdog said...

Heartbeat,

I appreciate the complement. Glad you enjoyed the post. By all means, you have my permission to re-post.

I struggled a bit with writing this post. I wasn't sure how it would be received. Would it be viewed negatively, or would people get the real points I was trying to make : 1) The medical field should make medical decisions, not politicians, judges, or bureaucrats, and 2) more donors means this issue doesn't happen.

In the future, if you see some other article of mine you would like to re-post .... re-post away !!

Thanks again,
The Sheepdog