Kathleen Sebelius and Organ Donations

I am most likely not going to make many friends with this post, but oh well, here it goes anyway.

I have been somewhat following the story of  Sarah Murnaghan, the ten-year CF patient, that is dying due to her lungs being in such bad shape due to her illness.  Absolutely tragic story.  One of the guidelines of the transplant lists UNOS is that children receiving adult organs must be 12 or older.  Of course that number is for the most part arbitrary, the data shows that children don’t always do well with adult organs.  Although it seems that is less common with lungs.

Sarah’s parents are talking to every media outlet they can to raise awareness to this issue.  I would hope that any parent would do the same.  As a parent, part of your responsibility is to be an advocate for your child.  This mom is trying to save her daughter’s life.  I can’t imagine being in her position.  I couldn’t hate someone enough to wish this on anyone.

A congressman from Pennsylvania has asked Kathleen Sebelius to waive this requirement and allow her to be put on the adult waiting list.  Sebelius has declined that request.

“I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies,” Sebelius replied. “The medical evidence and the transplant doctors who are making the rule — and have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different that other organs — that it’s based on the survivability [chances].”

While this is a very hard thing to do when the life of a ten-year old is hanging in the balance, these decisions must be made without emotion.  What she said is 100% true.  When making decisions about who gets the organ and who doesn’t is a life and death decision.  Many people die every year while waiting for an organ to become available.

Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University School of Medicine in St. Louis says this:

When asked about concerns over whether adult candidates who are less sick are getting transplants instead of sick children, Sweet said, “There’s no way to really answer that question.” He said the number of adults who die waiting for an organ transplant greatly exceeds the number of children.

“The reality is … the numbers suggest that there are lots of patients who are running out of time on the waiting list and many more patients run out of time … in the older age group than the younger group,”

The question also becomes does she even have the legal authority to waive this rule?  The UNOS list is not a federal list.  It is done by a private organization that has government oversight, but operates independently.   This is one of the few things in our country that are still done by need.  The only exception being that before being put on the list you must be able to prove that you can pay for the medications that are mandatory for all transplant patients after surgery.  In most cases that will be done through medical insurance.

We have to look at outcomes when these decisions are made.  There are only so many organs to go around.  This from The Mayo Clinic on lung transplants on CF patients:

  • Lung transplant. If you have severe breathing problems, life-threatening lung complications or increasing resistance to antibiotics used to treat lung infections, lung transplantation may be an option. Because both lungs are affected by cystic fibrosis, both need to be replaced. Lung transplants for people with cystic fibrosis are controversial because studies indicate the procedure is associated with many complications, and may not prolong life or enhance quality of life.

We also have to remember that is said to be “end stage”.  CF affects more than just the lungs.  It also damages the liver, causes intestinal damage and quite a few other problems.  What are her other health issues?  Like it or not in cases such as these survivability rates must be taken into consideration.  Doesn’t it make more sense to give the limited amount of organs to people who have the most likelihood to survive?  Now, I am not saying that Sarah is not one of these people, she may well be.  But the truth is we aren’t hearing that side of the story.  We are hearing the pleas from a family who is facing the loss of a child.

It is very possible that we need to look at these rules again.  As medical advances are made it may be very possible that putting adult organs into children has gotten to be an easier procedure than in the past and that number can be lowered or even done away with.  But looking at that data is going to take more time than she has.  As an update to this story, her family has filed a lawsuit this afternoon asking a judge to waive the rule while the regulations are being studied again.

This sounds cruel and looks nothing less than wicked in writing, but these decisions must be made by medical need, not emotion.  Again, I wouldn’t do anything different if Sarah was my child.  I would do everything possible to save the life of my child.  But we have to step away from the emotion of this and look at the medicine of the situation.  This has nothing to do with Obamacare, as I have heard ballied about today and yesterday.  These rules were in place long before he even took office let alone before Obamacare became law, current regulations came into place in 05.

The amount of available organs in this country are few and become even fewer for young children.  The organs must go to the people who are the most likely to have a positive outcome.  We cannot run an organ donor list based on giving to the squeaky wheel, who has more money, more prestige, or any thing other than medical need and survivability rates. The science at the time when these rules were put into place said that a young child taking an adult lung wasn’t that person.

A very sad truth is that someone has to die in order for this child to live.  Another sad truth is that an adult who likely is just as ill will not get the organs if she does.  There are no good outcomes in this situation.  47 people in her state are on the adult list waiting for the same organ.  We should take a step back and realize that not everything is political.  This tragic story isn’t about politics, it is about a family facing the loss of their child and being helpless, and an organ list that will always make a choice about who gets a second chance of life and who doesn’t.  Sad, but true.

Kathleen Sebelius did exactly the right thing, she left these choices up to medical professionals instead of getting the government involved. This is exactly what conservatives say they want.