Speak Out for Sarah Murnaghan

[VAmom]

IN THE NEWS: Sarah Murnaghan, a ten-year old with cystic fibrosis, needs a lung transplant. She has weeks to live. Federal policy requires a child must be at least twelve years old to be on the adult transplant list. Sarah won't live to twelve without the transplant.Secretary of Health and Human Services (HHS), Kathleen Sebelius, has asked for a review of the policy but has said it will takes years to make any changes. The HHS Chief of Staff's telephone number is 202/690-8157. I called to voice my opinion and they transferred me to a hot-line for the Office of the Secretary where I was permitted to leave a message. I don't know that it will help Sarah, but it was worth a try. I encourage you to call and voice your opinion.

 

[mindy515]

I just left a message as well - I hope everyone does this! AS a CF Mom I cannot imagine knowing the technology and advancements are out there you just don't have access to them due to an age restriction. God, help this family!

 

[albino15]

Well, we are getting a good first glimpse of Obamacare. Kathleen Sebelius could waive the age rule for this girl but she has decided not to. The fact that one person has that much power over someone's life is horrifying.

http://thinkprogress.org/health/2013/06/05/2104921/sarah-murnaghan-denied-lung-transplant/

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[BreathinSteven]

This has nothing to do with "Obamacare" - this has everything to do with the organ allocation system. Sebelius could have waived the rule - she chose not to interfere and allow the people with a more in-depth knowledge of this situation make their judgment. She knows that there are medical professionals and others staffing committees at UNOS/OPTN with a much greater understanding of the entire situation and she chose to trust them - one might have thought that would have given Judge Baylson pause, but it did not. His action set precedence, and probably not a good one for us. Now, when someone is not satisfied with a particular listing situation and they have power, through wealth, influence, or media spouting accurate or false information - they will lawyer-up and muddy the waters. This will not be a good outcome in the longer term future. And it should be remembered - this is not simply about saving the life of a 10-year-old girl - this is about choosing who lives and who dies... The lungs that may be directed to Sarah will be at the expense of the person to whom they were destined. That person very well may not get another chance... Adult lungs given to Sarah will not fit, and will have to be transplanted partially. Taking lobes off lungs for transplant complicates the surgery markedly and reduces Sarah's chances of survival, and longer term survival. The allocation algorithms look not only at level of illness, but at likelihood of survival. Giving adult lungs to a child with a riskier surgery and statistically lower survival rate, versus giving them to an adult with a markedly survival rate and lower risk surgery, might seem to be an inappropriate use of a rare resource. The decision here needs to be whether to save a child, or whether to save an adult - and that adult may be a father, a mother, a sole wage earner in a family - with the knowledge that the better match is the adult - that is the decision that also must be considered. Love, Steve

 

[triples15]

This has nothing to do with "Obamacare" - this has everything to do with the organ allocation system. Sebelius could have waived the rule - she chose not to interfere and allow the people with a more in-depth knowledge of this situation make their judgment. She knows that there are medical professionals and others staffing committees at UNOS/OPTN with a much greater understanding of the entire situation and she chose to trust them - one might have thought that would have given Judge Baylson pause, but it did not. His action set precedence, and probably not a good one for us. Now, when someone is not satisfied with a particular listing situation and they have power, through wealth, influence, or media spouting accurate or false information - they will lawyer-up and muddy the waters. This will not be a good outcome in the longer term future. And it should be remembered - this is not simply about saving the life of a 10-year-old girl - this is about choosing who lives and who dies... The lungs that may be directed to Sarah will be at the expense of the person to whom they were destined. That person very well may not get another chance... Adult lungs given to Sarah will not fit, and will have to be transplanted partially. Taking lobes off lungs for transplant complicates the surgery markedly and reduces Sarah's chances of survival, and longer term survival. The allocation algorithms look not only at level of illness, but at likelihood of survival. Giving adult lungs to a child with a riskier surgery and statistically lower survival rate, versus giving them to an adult with a markedly survival rate and lower risk surgery, might seem to be an inappropriate use of a rare resource. The decision here needs to be whether to save a child, or whether to save an adult - and that adult may be a father, a mother, a sole wage earner in a family - with the knowledge that the better match is the adult - that is the decision that also must be considered. Love, Steve

This.

Very well said Steve. Those are pretty much my exact thoughts on this subject, however you stated them much more eloquently than I have been able to.

That's not to say that my heart doesn't break for this little girl and her parents. As a mother, I can't even BEGIN to imagine what they are going through. I hope and pray she gets lungs.


Autumn 32 w/CF

 

[welshwitch]

Ditto on the Obamacare stuff. That is not the issue. Let's all try to keep politics out of this. But enough of that. Some good news. Looks like Sarah won the ruling:

http://www.cnn.com/2013/06/05/health/pennsylvania-girl-lungs/index.html?hpt=hp_bn1

 

[albino15]

Obviously this girl's doctor's thought she was an acceptable candidate for adult lungs it's just her age that caused the issue and a technicality like that shouldn't decide if a person lives or dies. It's just an example that one size rules do not fit all. And what's even more concerning is the CFF's lack of advocacy I mean even if they were against this girl getting a transplant I'd like to hear them say it. They are our biggest advocate and yet they stayed silent. Even in the response they put out they say they want to leave the decision between the doctor and patient. Well, the doctor and patient thought this girl should have a transplant and this one rule stopped them.

 

[fcalbano]

I know this is a very sensitive issue but has anyone considered that the "age" rule was developed in 2005. I don't think it should be about age as much as body size and mass. Lung transplantation is very tricky, much more difficult than a kidney or liver. A kidney is placed in the open abdominal cavity and the liver usually only a lobe is used- like a pancreas. Lungs depend a lot on size and shape - architecture of the donor and recipient. I have not heard from many transplant people on this particular case. All I have understood is that in this case, if adult lungs are used they will need to be "Modified". I worked many years for a major transplant center, in the renal division though, and I never heard of modifying lungs. I have cf, my wife lost both parents, when they were each quite young to kidney failure, her opinion simply is that organ donation should be the default on our driver's license rather than not donating as the default. In other words if for some religious or other reason you did not want to be an organ donor you would have sign off. Is this case just about age or about the disgraceful lack of organ donors in general?

 

[CrisDopher]

Extremely well-said Steve. You encapsulated a lot of my thoughts exactly, especially as concerns the court decision.

As for you, Albino15, the fact that you would bring such flaming and unhelpful rhetoric to this forum disgusts me.

 

[Liza]

The CFF's focus is on a cure and treatment and keep out of transplant topics. Here is a excerpt from a blog discussing a meeting with Dr. Beall from the CFF.

Dr Beall and I managed to sit quietly for a few moments- I gave him an antique rose tiepin that I found that was perfect for him. He said, “I don’t want people with CF to have transplants; we want to find something better for them. You know there are no guarantees. We’re going to find something better soon.” He discussed the progress, which of course I knew about but reiterated that my friends with 30% capacity couldn’t really be helped with these treatments. I wanted to tell him that some of my friends can’t wait for the “cure”- they need help now, and transplants are the only way to stay alive. In a second, he stood up, asked if the crew was ready and my brief conversation was over. I felt saddened, like he dismissed my survival or the survival of so many of my friends who are post-transplant. It felt like I represented failure to him; what a sense of responsibility he must feel. Of course I want a cure, of course I want the young generation with mild disease to never need transplants because a better treatment is available, but it felt like Bob Beall represents young kids who still have 80-100% lung capacity, and their futures are open with possibilities. I hope those kids live a long full life, much better than mine.

 

[fcalbano]

I would appreciate it if you might attempt to criticize me when using my correct name. I am certain that this is not the place for flaming +/or unhelpful rhetoric. I am sorry my perspective disgusted you. It is truly not my purpose to cause such a vehement reaction. I was just trying to point put that the "age rule" was established not so long ago and that lung donation is trickier than many other organs. Lungs from a very small person may not fit in a very large person... effecting the "outcome" My concern is that Sarah may not survive or worse suffer as a result of the surgery. UNOS based the policy on outcomes which means they've done it enough to know if it will likely work or not. So it sounds like kids, who are still growing have had poor outcomes when receiving adult lungs. My concern is that Sarah might not do well and a set of donor lungs might be lost in the process. And would any of this be an issue if we had enough donor organs to go around? I feel like that is the least we can ask for...

 

[triples15]

I would appreciate it if you might attempt to criticize me when using my correct name. I am certain that this is not the place for flaming +/or unhelpful rhetoric. I am sorry my perspective disgusted you. It is truly not my purpose to cause such a vehement reaction. I was just trying to point put that the "age rule" was established not so long ago and that lung donation is trickier than many other organs. Lungs from a very small person may not fit in a very large person... effecting the "outcome" My concern is that Sarah may not survive or worse suffer as a result of the surgery. UNOS based the policy on outcomes which means they've done it enough to know if it will likely work or not. So it sounds like kids, who are still growing have had poor outcomes when receiving adult lungs. My concern is that Sarah might not do well and a set of donor lungs might be lost in the process. And would any of this be an issue if we had enough donor organs to go around? I feel like that is the least we can ask for...

Hi fcalbano,

ChrisDopher's comments were not directed toward you, but rather Albino15, who posted twice in this thread before your post. I believe he was addressing her comments regarding Obamacare/Sebilius/the CFF.

I think your point is a very rational one, that no one would consider flaming or rhetoric, nor be disgusted by.

Take care,

Autumn 32 w/CF

 

[RytheStunner]

Steve has it right. It's a damn shame that people have to blindly blame Obamacare for every piece of medical news in the media today.

 

[kosdancer]

Very well said, Steve - my thoughts exactly. And I never heard a statement from the doctor, only from the family and misinformed media. I wish that they had gotten out the message more clearly that the real issue is a lack of donors, NOT the evil organ allocation people. I do think that redoing the rules based on size/weight is probably a better method, but I was amazed that they made an exception for one person without really knowing the full story. Maybe the doctor testified at that trial as well, but it seems crazy to make that kind of decision.

 

[albino15]

I guess I just don't understand. It seems like common sense to me that we who suffer from cystic fibrosis should be very bothered by the fact that someone would have to go through the head of Health and Human Services and a judge so their kid doesn't die because they're 10 instead of 12 and just so you know there are reports that THE DOCTORS think she could handle adult lungs and this is the information I am operating off of. What if she was 11 years and 364 days? Is that so different from a 12 year old?

I would also like to point out that if you go to the main page of the CFF and scroll down and look to the right you will see a link that says "Get Involved" and "Become an Advocate." I mean for goodness sakes the CFF devotes a whole day to going up to Washington and meeting with members of Congress and advocating on our behalf so don't tell me they shouldn't pick a side. Someone mentioned that the CFF is only concerned with a cure and treatment, well do you not consider lung transplantation a treatment?

And I'm not just shooting off blindly here. It is MY OPINION that Obamacare is going to lead to more situations just like this one. I am perfectly fine with people disagreeing with me but there is no need to call my thoughts and opinions "disgusting", I would never disparage anyone that way without properly backing it up.

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[Printer]

VA MOM:

When you list in your profile "HIGHEST LEVEL OF EDUCATION" Prefer not to answer. This answer spells so much about you. Your ignorance of the lung donor program is only exceeded by your ignorance of obamacare

You are indeed entitled to your own opinion, you however, are not entitled to having your own facts.

Bill

 

[kmhbeauty]

I personally know nothing about the lung donor program, but my question is are they changing the rules now so children have a better chance, or is this a one time thing? I have been reading the articles here and there about the child getting her new lungs.

 

[VAmom]

VA MOM:When you list in your profile "HIGHEST LEVEL OF EDUCATION" Prefer not to answer. This answer spells so much about you. Your ignorance of the lung donor program is only exceeded by your ignorance of obamacareYou are indeed entitled to your own opinion, you however, are not entitled to having your own facts.Bill

Bill:I joined cysticfibrosis.com in hopes of learning from others experiences and sharing my own experiences in regards to CF. I did not see where identifying my “Highest Level of Education” was necessary, nor do I see where it spells so much about me. I am a college graduate, Bill. My job requires that I continue my education to maintain my credentials. And yes, I am ignorant. I do not begin to understand many, many things. I confirm that I am ignorant on the lung donor program. And HOW did you know of my ignorance of obamacare? I’m not sure of what facts I have other than a way to reach the HHS Hotline to leave a message for the Secretary of HHS.I regret that I put my post out there and that it irritated you, Bill. I am also sorry that you have to deal with the ravages of CF every moment of your life. I wish the best for you.

 

[kmhbeauty]

Ive learned with this site that no matter what you post, it will always piss someone off....... I just keep posting lol

 

[2005CFmom]

I personally know nothing about the lung donor program, but my question is are they changing the rules now so children have a better chance, or is this a one time thing? I have been reading the articles here and there about the child getting her new lungs.

I wish I could find the article I read about this so I could refer you to it. But I believe they will still maintain 2 separate lists, but now there is an appeals process in order to get a child put on the adult list. But I also think there was to be another hearing about the matter, so that could change.