Sebelius: I Can’t Step Into Girl’s Transplant Case (When Other Children Are Just As Sick.)

[Purveyor]

PHILADELPHIA (CBS/AP) — The U.S. Secretary of Health and Human Services says she doesn’t want to intervene in transplant decisions about a dying Pennsylvania girl when other children are just as sick.

Kathleen Sebelius says medical experts should make those decisions.

But relatives of 10-year-old Sarah Murnaghan say they want the policy changed for all children awaiting a lung transplant, not just Sarah.

Sarah’s aunt Sharon Ruddock says older children should be eligible for adult lungs because so few pediatric lungs are available.

She says that would add just 20 children to the 1,600 people on the adult waiting list.

MORE...

http://philadelphia.cbslocal.com/2013/06/04/sebelius-i-cant-step-into-girls-transplant-case/

[laundry_queen]

1. I have a hard time understanding this rule

unless modifying adult lungs has such incredibly horrible outcomes that it's nearly pointless, I don't understand why they can't put kids on the same list. Seems unfair that this little girl needed lungs a few years before most people with CF, but because she got this sick before she turn 12, she's doomed. And so few kids need lungs it doesn't seem like it would make some kind of huge difference in the adult list. I don't know what the answer is.

[Yo_Mama]

7. I think the issue probably is chest capacity

How many 10 year olds - especially with a life-threatening condition, which tends to affect growth - have a chest that could accommodate an adult pair of lungs?

I suppose they could try to trim them up, but obviously that's going to make the process more risky. It's awful, but suppose one out of two kids would survive such an attempt, but two out three older persons will?

This is harrowing stuff at best, and this certainly isn't the best. Maybe policies aren't the same everywhere.

I found these statistics which looked like the wait for pediatric lung transplants isn't that bad:
http://www.stlouischildrens.org/our-services/lung-transplant-program/statistics

But that's St. Louis. CHOP seems to do less of them and not have as good outcomes:
http://www.chop.edu/service/lung-transplant-program/volumes-and-outcomes.html

Size does seem to be the issue with kids:
http://www.chop.edu/service/lung-transplant-program/lung-transplant-waiting-list.html

Lungs are allocated to patients based on the age, height, and blood type of the patient. Patients that are <12 years old, lungs are allocated as per body size (height), blood type, and amount of time on the waiting list. Patients that are 12 years and >, lungs are allocated based on a scoring system that determines who on the waitlist is the most sick versus who has been on the list the longest.

Stanford's page also refers to size matching:
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/transplant/lungstran.html

When a donor lung becomes available, a computer searches all the people on the waiting list for a lung and sets aside those who are not good matches for the available lung. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth. Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographic distance between the donor and the recipient.

[laundry_queen]

8. I understand that

I get all the size matching. I've read plenty of lung transplant stories where a slight woman waits longer than a tall man because it's harder to find a size match. But it was also my understanding that they are able to modify lungs to fit. It's definitely not ideal but many people have no choice - they will die soon without them. I'd counter that unless the outcomes were really horrible for children/modified lungs, it's the best chance that a child under 12 has. I also understand the size matching that goes on, however, it's often the case that they make allowances for the sickest patients (the ones closest to death) by accepting lungs that may be a tad big or small or whatever (ie smoker's lungs). It's up to each individual transplant surgeon what organs they accept or not. What if the lungs of a small woman become available that may fit? This child won't even have the chance to get those lungs, which may very well go to someone who is not as sick as she is, which I think is a shame. There shouldn't be an arbitrary age cut off, IMO.

[LisaL]

35. You can give lungs to an adult where they will fit, or you can give them to a child

where they won't. I presume the lungs have to be cut in order to fit into a child.
So, where will be the best chance of success?

[laundry_queen]

41. Not talking about sticking lungs from a 6 foot tall guy into a 5 year old.

I said that if there is a small woman who dies, and the child has a large enough chest cavity at 10, there's no way that child should be denied if that child is the sickest patient. My cousin is smaller now as an adult in her chest than my average size 10 year old is (yes my cousin shops in the children's department for her clothes). That's the kind of transplant I was talking about. They can still size-match without excluding children under a particular age.

[PennsylvaniaMatt]

2. This must be gut wrenching for Sec. Sebelius...

I know there has been a lot of pressure on her, but after her comments today, I understand her point. It is pretty grotesque if she is picking and choosing who lives and dies.

[JI7]

4. i can understand that but how about changing it so the rule applies to all kids

not just this specific one.

i still would like to know why there is this age limit and whether it has to do with adult lungs no working for young kids.

[Psephos]

12. I have remarkably less concern for Sibelius than for the child.

As well as for additional children in the future whose fates will be determined by bureaucratic adherence to a rule rather than individual assessment by a caring human.

[nobodyspecial]

13. And if that was the case

we would soon have the rich gaming the system because individual assessments would end up favoring rich donors who could build a hospital wing.

[Psephos]

14. All or none for you, I see.

I believe there's room both for sensible rules, and for a sensible way to circumvent them for exceptional and/or compassionate reasons.

[oldhippie]

30. And you don't think the rich ....

... would somehow be a lot better at "circumventing" those rules than the poor?

[Psephos]

32. So, to prevent meddling by the rich, children may sometimes have to die.

Not a good trade. As history shows, the rich will always meddle. We can limit it but not eliminate it.

Don't let the perfect be the enemy of the good.

Looks like events have caught up with you, anyway.

http://www.democraticunderground.com/1014501306

[Puzzledtraveller]

17. I made a comment in another thread

basically that though we can have good governance, we must not forget that government doesn't feel, it doesn't have sympathy, or empathy. That is not to say it can't do good things but we place or project a humanity on something that isn't. Just like some want to do on corporations.

[Psephos]

22. well said n/t

[liberal_at_heart]

26. but who gets the lungs? If you make lungs available, who gets it? There are lots of sick

children right now who are dying waiting for lungs. As heart wrenching as it is, does she deserve lungs more because she was able to get on tv than a child who is also dying but did not make it onto tv? There is no good answer to this problem. I am glad they are reviewing the rule. It may not come in time for this little girl and that is truly sad. My heart breaks for her parents.

[Psephos]

33. The good answer is...

...to not blindly trust a written rule, but to have a mechanism for review by a compassionate human in exceptional cases.

[Politicub]

34. They are all exceptional cases

Each of the people on the list have families and people who love them.

I understand Sebelius' position on the issue.

[Psephos]

38. By definition of the word exceptional, they are not all exceptional.

I would certainly hope that families would advocate for their own. In the exceptional case that is not well-addressed by the rules, a review would be initiated by such advocacy.

Rules are written by humans. You really think a convocation of human minds is going to envision all possible applications of a rule, and come up with something that will always serve every case fairly and reasonably?

Good luck with that.

I suppose next you will suggest we do away with reviews on death penalty cases, too.

[liberal_at_heart]

40. they are all dying. The doctors do prioritize as best they can. They do try to put the sickest

people at the top of the list. I will be glad if this little girl lives, but I can't help but wonder if the exception is that she was on tv and the other sick chidren weren't as lucky to make it onto tv. Even if this little girl lives other children are dying right now that need a transplant just as desperately. We just don't see them or hear their stories.

[freshwest]

42. I think the problem here is that the doctors don't think it will work. Am I wrong?

Leaving it between the patient, parent and medical professional is the wisest thing. But I don't see how putting the child on the adult list will help. More donors need to be found.

My child was very concerned about a fellow classmate with CF who was told ten years ago she had to wait until she was older. At 16 she finally got the surgery and is doing better. But she also was getting good health care from Medicaid and made it through those years with few hospitalizations.

The other kids, though, knew that she was terminally ill and worried the whole time that she would die and not make it to the transplant age.

[JI7]

3. does anyone know why there is the age rule ? does it have to do with

the adult lungs not usually being effective or havingworse side effects for young patients ?

this is a very difficult case. id on't blame the parents for trying to do anything they can to help their child. i really would not want to be where Sebelius is right now.

i would like to hear what doctors and other medical experts have to say about this. i hate how the news reports this without a discussion of how and why we have these rules and effects of it.

[DevonRex]

6. It has to do with lung size. Adult lungs don't fit

in a child's chest cavity. I guess there are some exceptions. Bit usually even if a child is tall, the chest isn't that large.

[laundry_queen]

10. They are able to modify the lungs

There have been living lung transplants where they just transplant lobes - I don't know why they can't modify donor lungs the same way. But as I mentioned above - even IF it's true that adult lungs don't *usually* fit, children shouldn't be arbitrarily excluded from a list because of their age - if there are some lungs from a woman of slight stature that may fit, it's a shame if a very sick child doesn't even have the chance to receive those lungs because of some age limit.

[Yo_Mama]

15. When I was hunting around

I found out the following - some places have had success with stapling off the margins of the lungs. But that is apparently in a situation in which there is a bit of a closer fit. I imagine how much you have to staple determines survival rates. If you have to staple a whole lot, I imagine you are actually cutting off a lot of the actual lung capacity, which just doesn't work. The internal structure of the lung - the major airways - can't be disrupted, so it looks like you always have to trim the margins, which are where most of the oxygen transfer takes place.

Also I was looking at the single/lobe thing wondering if we couldn't use the publicity in this case to help her that way, but then I ran into this overview in Canada that says it just doesn't work in CF. They have to do a bilateral for CF cases. Not a lobe and not a single.

Therefore, I'm going to object to your characterization of this as "arbitrary". It's anything but arbitrary. Vanderbilt Tennessee's list has age greater than 65 or less than 14 as an absolute contraindication, for example. But of course that's for adult organs - when they find one that can fit, pediatric patients would be transplanted even if they don't do it there:
http://www.vanderbilthealth.com/transplant/25964

Wiki has some more info. This seems rather awful, but it is not arbitrarily awful:
http://en.wikipedia.org/wiki/Lung_transplantation

For the younger/smaller patients, what they are actually using is size. So what you are saying they should do is what they are already doing. If lungs small enough to work for her become available, she will get them. It's just that it is less likely, because this kid probably has a chest capacity close to that of an average 8 year-old, and not too many donations from kids occur, due to lower death rates.

I sympathize with everyone's distress. I was up for hours reading about this because I couldn't sleep, and I wondered perhaps if she were transported to another place whether she'd have a better chance. But it doesn't appear that's much of a factor.

[laundry_queen]

23. All interesting

Not sure I'd go with Canada's research - we lag behind in organ transplantation research simply due to lack of numbers (that's not to say there aren't fabulous centres, it's just they do so few of them compared to the US). Funny, I actually was reading a blog of someone with CF the other day that has had a lobe transplant from a live donor and is doing ok (she's a few years past I think). I have no idea what country she's in. I think her lobe transplant was her second transplant, which makes more sense because they can leave the old lungs in the chest cavity in that case (whereas with original CF lungs they can infect the new lungs with different infections that are common to CF)

I get that stapling off the lung would interfere with oxygen transfer, and that the main structure of the lung needs to be preserved. I get that it's more risky. I'm not sure I agree that just because a child has CF they are small - most CF clinics now are super-proactive in getting children above the 50th percentile for their age because it correlates strongly to better outcomes - plus with newborn screening a lot of CF kids don't have to 'catch up' upon diagnosis, as they are diagnosed at a few weeks old before severe malnutrition sets in. I'd say that most CF children are closer to average size now, it's not 20 years ago anymore.

I agree that perhaps it would be best if she was transported somewhere else - the success of transplants is HIGHLY correlated with how many transplants a hospital has done. She's probably too ill now, though to be transported. I guess the parents are probably just beside themselves - when their daughter was born 10 years ago, people were told a cure for CF was right around the corner, and that most CFers live into their 20's and 30's now. I think the median age of survival has increased to around 40. It probably NEVER occurred to them that some children still do die of CF at a very young age. They likely were not expecting this so soon and then to be told their child has no chance at all is probably just too much for them. I don't blame them for exploring every avenue. I still think it's unfair and arbitrary how the system works. There should never be an age cut off, it should only be according to body size, imo. Plus, if they do choose for body size then I don't see why they can't put kids on the list, since they will only get an organ from an adult if that adult was very small anyway. No harm in putting them on the same list, IMO.

[Yo_Mama]

24. Apparently they are on the same list, but the criteria are different

Wiki:

Before 2005, donor lungs within the United States were allocated by the United Network for Organ Sharing on a first-come, first-served basis to patients on the transplant list. This was replaced by the current system, in which prospective lung recipients of age of 12 and older are assigned a lung allocation score or LAS, which takes into account various measures of the patient's health. The new system allocates donated lungs according to the immediacy of need rather than how long a patient has been on the transplant list. Patients who are under the age of 12 are still given priority based on how long they have been on the transplant waitlist. The length of time spent on the list is also the deciding factor when multiple patients have the same lung allocation score.

They're on the same list, but they're working off different criteria. The young ones are also matched for size, which apparently with the staple routine doesn't matter as much for transplants between adolescents and various-sized adults.

http://en.wikipedia.org/wiki/Lung_transplantation

This is the UNOS explanation of how their current policy works:
http://www.unos.org/docs/Lung_Patient.pdf

LAS is calculated for those over 12. Pediatric and adolescent lungs are offered FIRST to pediatric and adolescent patients.

Here's a paper discussing most of the current US system:
http://www.atsjournals.org/doi/full/10.1513/pats.200808-095GO

Timing of transplantation is also influenced by the underlying allocation system. One of the byproducts of the success of lung transplantation has been a steady increase in the number of adults undergoing lung transplantation (5, 20). Thus children are facing increased competition with adults for organs; this may explain why the ratio of transplants to waiting list deaths in pediatric candidates remains higher than that in adults (21). Because the principles for allocation of organs include a directive to “recognize the differences in health and in organ transplantation issues between children and adults throughout the system and adopt criteria, polices, and procedures that address the unique health care needs of children,” and because end-stage organ dysfunction has a significant impact on growth and development, priority has been given to children in U.S. transplant allocation systems (22). In 2005, when the allocation of lungs in the United States was modified to incorporate allocation to candidates over 12 years of age based on a combination of transplant benefit and medical urgency (23), these principles led to including preferential allocation of lungs from pediatric donors to pediatric recipients. However, this system provides limited benefit to children under 12. Because the diversity in diagnoses and small numbers of young pediatric patients was felt to preclude development of accurate models of lung transplant waiting list outcomes, lung transplant candidates under 12 years old were not included in the new algorithm and continue to receive organs only on the basis of waiting time. A mechanism to stratify younger patients based on medical urgency is on the horizon, however. Recognizing that infants carry the highest waiting list mortality rate among all transplant candidates, the OPTN board recently approved a series of proposals to direct organs from donors under 11 years old to younger children first (24–26). The proposal for lung transplant candidates prioritizes children under 12 awaiting lung transplant based on objective medical urgency criteria, and distributes organs from donors under 12 over a much greater distance before offering them to older children or adults (25). These proposals are currently scheduled to be programmed into the OPTN computer system in 2009 and will hopefully reduce waiting list mortality for infants and young children.

In 2010 the change was made to rank pediatric patients as Priority 1 or Priority 2s based on need.

The median survival time for pediatric patients is 4.3 years, which is not that far below adults.

[LisaL]

36. Yes, only bilater lung transplants will work for CF.

If you only transplant a part of a lung, that part will also get CF, as far as I understand it.

[LisaL]

37. She has CF.

Only bilateral lung transplant works for CF.


"Why does a person with CF need 2 new lungs? Can a person with CF get just 1 new lung?"

"Because CF lungs are infected with germs, people with CF require 2 new lungs. Otherwise, the new lung would get infected by the CF lung. This is called bilateral lung transplant."

http://www.cff.org/treatments/lungtransplantation/

[laundry_queen]

39. I know that. The blog of the person I'm talking about

that has had a lobe transplanted has CF. However, I do believe it was her second, in which case her first transplant would stay in while the lobes were put in.

I remember hearing awhile back they were exploring this - clearly they've decided not to. However, I think it's important to point out that even bilateral lung transplant patients with CF get infections from the bacteria that are harbored in their trachea and their sinuses as those areas are also mucous membranes affected by the CFTR. Also, a 'healthy' lung wouldn't get infected with a lot of the CF bacteria that is in CF lungs simply because it has a working clearing mechanism (although this is likely hampered by immune suppressing drugs required post transplant). It would be interesting to see how much they've studied this and what the outcomes were.

[Yo_Mama]

43. I think once they transplant non-CF lungs

They have far more options if something goes wrong.

But for CF lungs they do a complete replacement.

[indepat]

5. Me thinks the Secretary's comments are comparable to a governor stating he would not stay the

execution of someone known to be innocent: it just doesn't wash, it doesn't make sense. Moreover, it stinks to high heaven imo 'cause it's void of humanity.

[Yo_Mama]

9. No, that's not fair

It's not like switching a car battery. This family is asking for criteria to be changed from what they were, but if the criteria were set in the beginning to maximize successful transplants (saved lives), then changing them will in effect be killing people randomly.

Your analogy doesn't work, because when we stay the execution of someone, we don't do it by putting someone else in the electrocution chair.

There are other medical criteria used to figure out whether a person should be on the transplant list at all. Infections, etc. Everyone's innocent. To some extent, criteria are set to maximize success rates. This may mean that person A has a very low chance at a transplant through no fault of his/her own, but it also may mean that two more people out of every 20 survive per transplant. Because there are shortage of organs, the whole process involves an attempt to make the basic unfairness as fair as possible.

The HHS Sec can ask for a review of whether those criteria are well set, but I don't think she has the right to randomly override the decisions which were made by panels of experts who probably know a whole hell of a lot more about the ins and outs of it. A ten year-old this sick from CF probably is no more than the size of an average eight year old. Look at an 8 year-old's chest, and then look at an adult's chest. It's got to be difficult and involve chopping up the organ, which has got to mean lower success rates.

Then too, there's always the chance that they could try to transplant adult lungs in and fail, and two weeks later a better match could arise which would have given this child a much better chance.

I don't know jack about the ins and outs of this. But I was inspired to read what the criteria are, and they are size matching for little kids. I can't imagine why they would do that unless it increased the success rate.

[indepat]

11. Not having cut Madame Secretary a bit of slack was not cool: my

apologies.

[Yo_Mama]

16. It's totally understandable

I was up half the night reading stuff in a ludicrous attempt to find out if there was some other way to help this kid. I knew it was irrational - the doctors at CHOP will be experiencing the same thing we are. But still I did it.

Maybe the publicity over this case will inspire some family which has tragically lost a kid to opt for donation. This is utterly sorrowful.

[Jennicut]

21. I feel for the family, my older daughter is only about a year younger then this girl.

But sizing issues and her age make it more likely she won't get a good match. Just horribly sad all the way around.

[indepat]

25. Notwithstanding my mea culpa, a Federal judge has reportedly ruled the little girl can get

the life-saving lung. Yea!

[Raine1967]

19. +1

The HHS has asked for a review of the policy -- she should not be asked to step into this case personally.

from the op:

“It tugs at my heart. It’s not a perfect system. There is no perfect system. It’s the best we can do right now,” said Dr. Stuart Sweet, who is a board member of the United Network of Organ Sharing.

The organization issued a statement that says the rules can’t be changed for individual cases.

“If I change the system to give Sarah an advantage, there’s another patient, very likely an adolescent, who then gets a disadvantage,” said Dr. Sweet.

[Raine1967]

18. Ms. Sebelius is not a doctor --

I don't know all the details of this case, but this is from the link:

Sarah’s aunt Sharon Ruddock says older children should be eligible for adult lungs because so few pediatric lungs are available.

She says that would add just 20 children to the 1,600 people on the adult waiting list.

Sebelius has called for a review of transplant policies, but the Murnaghans says Sarah doesn’t have time for that.

This is heartbreaking. I don't think Sebelius should be making broad medical decisions -- it's not her job. She is not a doctor and should not be asked to intervene in cases like this.

[Roland99]

20. Anyone remember the name Sun Hudson?

[Ian David]

27. Update: A federal judge has agreed to prevent HHS from enforcing the age rule, giving Sarah a chance

Update: A federal judge has agreed to prevent HHS from enforcing the age rule, giving Sarah a chance to get an adult lung transplant.
http://thinkprogress.org/health/2013/06/05/2104921/sarah-murnaghan-denied-lung-transplant/

[Warren DeMontague]

28. It seems like there are no good answers here. That said, when you're talking about saving a child's

Life, moving heaven and earth should be the default course of action.

I dont think there are any bad guys here, except the disease. Heartbreaking.

[Shrike47]

29. I have to agree with Sibelius about her role.

She shouldn't change or bend rules for one person. She will then be asked to change or bend rules for every person.

One thing that would help would be to focus on getting more people to donate organs. If the demand didn't exceed supply, people wouldn't be fighting each other over their place in line.

[Purveyor]

31. Death panels...indeed! eom