10-Year-Old Needs Lung Transplant, parents suing to get the regulations changed

[Galaxy]

A terrible situation, but certainly a sticky one, I think.

Sara Murnaghan: Parents Of 10-Year-Old With End-Stage Cystic Fibrosis Challenging Organ Transplant Rule (http://www.huffingtonpost.com/2013/05/28/sara-murnaghan-organ-transplant-rule-cystic-fibrosis_n_3348653.html?utm_hp_ref=impact&ir=Impact)

"Janet Murnaghan said Sarah has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. Under a policy instituted in 2005, organ allocation policies are supposed to be based on severity of illness rather than the amount of time on the waiting list, but that approach only applies to patients over the age of 12. Sarah is a top priority on the pediatric list, but officials say there are far fewer pediatric donors due to improved treatment.

Her parents say the severity of Sarah's illness would normally make her the highest priority for an adult lung, but all adults in the region with her blood type will be offered the lungs first, even those more stable and with less severe conditions. After an appeal was declined, the online petition was launched calling for that policy to change and for federal officials to make an "exceptional ruling" on behalf of the child."

[rowech]

A terrible situation, but certainly a sticky one, I think.

Sara Murnaghan: Parents Of 10-Year-Old With End-Stage Cystic Fibrosis Challenging Organ Transplant Rule (http://www.huffingtonpost.com/2013/05/28/sara-murnaghan-organ-transplant-rule-cystic-fibrosis_n_3348653.html?utm_hp_ref=impact&ir=Impact)

"Janet Murnaghan said Sarah has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. Under a policy instituted in 2005, organ allocation policies are supposed to be based on severity of illness rather than the amount of time on the waiting list, but that approach only applies to patients over the age of 12. Sarah is a top priority on the pediatric list, but officials say there are far fewer pediatric donors due to improved treatment.

Her parents say the severity of Sarah's illness would normally make her the highest priority for an adult lung, but all adults in the region with her blood type will be offered the lungs first, even those more stable and with less severe conditions. After an appeal was declined, the online petition was launched calling for that policy to change and for federal officials to make an "exceptional ruling" on behalf of the child."

I heard about this case a couple weeks ago. It just doesn't seem to make any sense to me at all. If she can handle the adult lungs without complication, I'm not sure why the age groups are somehow treated differently.

[Lathum]

I didnt read the story, but the ACLU should get involved.

[SackAttack]

I heard about this case a couple weeks ago. It just doesn't seem to make any sense to me at all. If she can handle the adult lungs without complication, I'm not sure why the age groups are somehow treated differently.

Honestly, and I know this is going to sound assholish, the adults in need of a donor can't use pediatric lungs. She's able to draw from two different donor lists; it's just that one of them, she doesn't get priority.

The adults don't have that luxury, partly for biological reasons, and partly because can you imagine the shitstorm if an adult COULD use pediatric lungs and a 40-something stepped in front of a child on the pediatric wait list?

It's a crappy situation, no question. But the reason the groups aren't treated equally is because there isn't an equal ability to use whatever donated organs become available.

[rowech]

Honestly, and I know this is going to sound assholish, the adults in need of a donor can't use pediatric lungs. She's able to draw from two different donor lists; it's just that one of them, she doesn't get priority.

The adults don't have that luxury, partly for biological reasons, and partly because can you imagine the shitstorm if an adult COULD use pediatric lungs and a 40-something stepped in front of a child on the pediatric wait list?

It's a crappy situation, no question. But the reason the groups aren't treated equally is because there isn't an equal ability to use whatever donated organs become available.

On the flip side, how many kids are dying and having lungs to donate? Is it really a large enough number to be a viable option for her in the first place?

[Izulde]

This is one of those damned if you do, damned if you don't situations.

[Lathum]

Maybe a system where a donor can specify if they want a child to get first priority? Shouldn't be hard to make it part of the approval process.

[JonInMiddleGA]

Maybe a system where a donor can specify if they want a child to get first priority? Shouldn't be hard to make it part of the approval process.

Just off the top of my head I thought you were either in or out on donations, that you couldn't stipulate stuff.

[Lathum]

Just off the top of my head I thought you were either in or out on donations, that you couldn't stipulate stuff.

By approval I mean agreeing to be a donor. Maybe an additional box you can check or something.

[JonInMiddleGA]

By approval I mean agreeing to be a donor. Maybe an additional box you can check or something.

That's what I meant though ... you said something about donors specifying whether they wanted a child to get first priority. That's a stipulation and whether I'm right or wrong about it -- and I'm certainly no expert by an means -- I've always thought that was a no-no when it came to donations.

I mean, once you open that door & allow stipulations then where does it stop? Can I say "no old people" or "no addicts" or "no gingers"? Or in reverse, how about "first priority to conservatives" or "first priority to people whose names start with the letter J".

[bhlloy]

That's what I meant though ... you said something about donors specifying whether they wanted a child to get first priority. That's a stipulation and whether I'm right or wrong about it -- and I'm certainly no expert by an means -- I've always thought that was a no-no when it came to donations.

I mean, once you open that door & allow stipulations then where does it stop? Can I say "no old people" or "no addicts" or "no gingers"? Or in reverse, how about "first priority to conservatives" or "first priority to people whose names start with the letter J".

Yeah, this. Plus I imagine some of these donations have a very limited life span and the last thing they can do is get the lawyers involved to find out exactly what kind of human being Steve McGrouch wanted his kidneys to go to.

Horrific situation, but I imagine there's probably sound logic behind there somewhere. What doctor wouldn't rather see a 10 year old kid get a lung before a 50 year old who might have smoked all his life?

[Galaxy]

Sebelius won't intervene in girl's transplant case - Vitals (http://vitals.nbcnews.com/_news/2013/06/04/18754425-sebelius-wont-intervene-in-girls-transplant-case?lite)

[RedKingGold]

One of my groomsmen is apparently working on the case, definitely gives me a rooting interest in this one (for the transplant, obviously).

[molson]

A federal judge in Philadelphia has made her eligible to seek donor lungs from an adult transplant list. So I guess it doesn't mean that she necessarily goes to the top of that list, just that she's eligible. The parents have insisted she'd be on top of an adult list, but I haven't heard any other confirmation of that. And what about every other child in the region (or country) that is also in need of a lung transplant - including those who may be as sick or sicker than this child? This isn't a rule change, per se, so I guess they can all take their own legal action and hope they get a similarly-minded federal judge. That's kind of the messy potential and the argument for sticking to rules, the chance that judges will make case-by-case life-or-death decisions.

Judge rules for Sarah after parents file lawsuit in Pa. lung transplant case (http://www.philly.com/philly/health/20130605_ap_parentsfilelawsuitinpalungtransplantcase.html)

[lungs]

We need to get better at growing this stuff in petri dishes.

[JonInMiddleGA]

What a lovely precedent, let's turn medical procedure over to the courts. I'm sure that'll end well.

But the lawyers will love it, this judge just declared open season on any/every similar policy.

edit to add: And most likely any/every not-all-that-similar policy as well.

[RedKingGold]

Cats and dogs living together! It'll be anarchy! FEAR THE LAWYERS

[BYU 14]

What a lovely precedent, let's turn medical procedure over to the courts. I'm sure that'll end well.

But the lawyers will love it, this judge just declared open season on any/every similar policy.

edit to add: And most likely any/every not-all-that-similar policy as well.

This could definitely create chaos and as much as I want this girl to get a transplant the judges ruling is setting a bad precedent.

[Galaxy]

This could definitely create chaos and as much as I want this girl to get a transplant the judges ruling is setting a bad precedent.

I agree.

From an article I read on MSNBC:

Judge orders girl added to adult lung transplant list - Vitals (http://vitals.nbcnews.com/_news/2013/06/05/18779741-judge-orders-girl-added-to-adult-lung-transplant-list?lite)

"They said that Sebelius had the authority but refused to take action on behalf of Sarah and other children in her situation. Nationally, about 1,700 people are waiting for lung transplants, including 31 children 10 and younger, according to OPTN data. In Region 2, Sarah's region, 222 people are waiting for lung transplants, including six children 10 and younger. "

"Although dozens of strangers have offered to donate part of their lungs for Sarah in living lobe transplant operations, the child's condition is unsuitable for the rare procedure, her family says. The Murnaghans have asked for direct donations of organs from any family who may lose a loved one in the near future."

I don't think they can "ask" for direct donations. Interesting that they just found about the two separate lists last week.

[JonInMiddleGA]

I don't think they can "ask" for direct donations. Interesting that they just found about the two separate lists last week.

Apparently (and to my surprise) they can.

This is from Questions About Organ Donation | New York Organ Donor Network (http://www.donatelifeny.org/about-donation/faq/#nul)
What is Directed Donation?

Directed donation is a request made by a donor or donor family to transplant a specific recipient. This practice is legally authorized by the Uniform Anatomical Gift Act (UAGA) and by most state anatomical gift laws, which use the UAGA as a guide. The policy of the national Organ Procurement and Transplantation Network (OPTN), operated by United Network for Organ Sharing (UNOS) under federal contract, recognizes directed donation as long as the agencies involved take steps to verify the medical suitability of the organ offer for the specified recipient. The Federal regulation that guides the OPTN (the OPTN Final Rule) expressly allows directed donation to a named individual. The role of transplant professionals is to ensure that any donor offer is handled properly and that the safety and interests of the donor and donor family are protected. [Source: Health Resources and Services Administration, U.S. Department of Health and Human Services – Press Release, May 29, 2009]

[Galaxy]

Apparently (and to my surprise) they can.

This is from Questions About Organ Donation | New York Organ Donor Network (http://www.donatelifeny.org/about-donation/faq/#nul)

Hmmm...that's new information to me.

[Galaxy]

Aren't their size complications of taking the lungs of an adult and putting into a 10-year-old?

[molson]

Apparently (and to my surprise) they can.

This is from Questions About Organ Donation | New York Organ Donor Network (http://www.donatelifeny.org/about-donation/faq/#nul)

So as long as payment is in cash and everybody shuts up about it, you can sell a kidney.

[JonInMiddleGA]

So as long as payment is in cash and everybody shuts up about it, you can sell a kidney.

But the distinction in those cases, I think, is that they take place outside the official organ donation process/procedure/organization/organizational structure.

[Lathum]

Aren't their size complications of taking the lungs of an adult and putting into a 10-year-old?

pretty sure the doctors have worked that one out already.

[Galaxy]

pretty sure the doctors have worked that one out already.

Wasn't exactly what I meant, but gotcha.

[Galaxy]

Sarah Murnaghan Develops Pneumonia in One Lung - ABC News (http://abcnews.go.com/Health/sarah-murnaghan-develops-pneumonia-lung/story?id=19607924#.UdyxEG2Dn-A)

So the girl got a second set of lungs, and now has pneumonia in one lung.

[SackAttack]

That second set was infected with pneumonia to begin with though, IIRC.

[Mizzou B-ball fan]

Sarah Murnaghan Develops Pneumonia in One Lung - ABC News (http://abcnews.go.com/Health/sarah-murnaghan-develops-pneumonia-lung/story?id=19607924#.UdyxEG2Dn-A)

So the girl got a second set of lungs, and now has pneumonia in one lung.

She's probably still better off with one good lung working than she was before with two lousy ones. Hopefully they get it cleared up.