Organ Donor Law

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AlyssaEimers's picture
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Organ Donor Law

Organ Donor Law May Keep Sarah Murnaghan From Getting The Life-Saving Lung Transplant She Needs : Medical Daily

Should how old you are prevent you from getting a life saving transplant?

Spacers's picture
Joined: 12/29/03
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I think I need more information about why the age limit was put into place. Is it because children that young don't generally tolerate transplant surgery? Is it because the suppressive drugs stunt their development in other ways? Is it because adult organs are generally "too big" for them and don't work well? If there are valid medical reasons why an age limit is in place, then sadly I'd have to say yes. Maximizing the success rate of organ transplants across the board is a very reasonable thing to try to accomplish, and "wasting" donor organs on someone who isn't likely to survive and thrive isn't in anyone's best interest, including the child. If, however, the age limit is an arbitrary line in the sand, then I would say no, the person most in need should get the organ regardless of age.

ftmom's picture
Joined: 09/04/06
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Anyone know why they have this rule? If there is a significant difference in the success rate then I could see being behind it. As sad as this is, there is just not enough organs to go around, so I think they should go to the people with the highest chance of survival.

Off to do more research on this.

ftmom's picture
Joined: 09/04/06
Posts: 1538

Anyone know why they have this rule? If there is a significant difference in the success rate then I could see being behind it. As sad as this is, there is just not enough organs to go around, so I think they should go to the people with the highest chance of survival.

Off to do more research on this.

AlyssaEimers's picture
Joined: 08/22/06
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I do not know what the reasoning is either. I originally saw the article on Fox, but looked for other articles to see if they would say anything different, but they all said pretty much the same thing.

Spacers's picture
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I wonder if this is a new rule, or a rule specifically for lung transplants? There seem to be lots of kids who have received heart, kidney, and liver transplants.

Joined: 04/12/03
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I'm completely ignorant on the subject. Can children under 12 have their organs donated?

AlyssaEimers's picture
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I do not know about Lung donation, but I do know that SIL had to be 18 to consent to donate her kidney to BIL. That said, I though a child could RECEIVE an organ. I am not sure what the difference between a kidney and a lung donation is.

Joined: 08/17/04
Posts: 2226

According to huffpo, she is top on the list for pediatric donors but that list is small and that it's the adult list that she is lower on due to age. The whole background is listed in the article.

Sara Murnaghan: Parents Of 10-Year-Old With End-Stage Cystic Fibrosis Challenging Organ Transplant Rule

AlyssaEimers's picture
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Thanks for the other article. No mater how you slice it, this is a sad situation.

Joined: 08/17/04
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oh agreed. I know there needs to be rules but if I was her mom...I would be fighting tooth and nail to do whatever I could do for her.

AlyssaEimers's picture
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"Jessica80" wrote:

oh agreed. I know there needs to be rules but if I was her mom...I would be fighting tooth and nail to do whatever I could do for her.

Me too.

elleon17's picture
Joined: 01/26/09
Posts: 1981

I had a girlfriend pass away from CF when we were 32. She had her first lung transplant at 14 and second in our mid 20's.

The list is funny and people get moved around depending on how their condition is evaluated.

I'm not certain why the rule is set at 10, but I would guess it has to do with development and chance of rejection of the organ. It is certainly sad and I would be doing the same as her mom and fighting for anything to save her litle girl.

AlyssaEimers's picture
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"elleon17" wrote:

I had a girlfriend pass away from CF when we were 32. She had her first lung transplant at 14 and second in our mid 20's.

The list is funny and people get moved around depending on how their condition is evaluated.

I'm not certain why the rule is set at 10, but I would guess it has to do with development and chance of rejection of the organ. It is certainly sad and I would be doing the same as her mom and fighting for anything to save her litle girl.

OT - :wavehello:

Joined: 08/17/04
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"elleon17" wrote:

I had a girlfriend pass away from CF when we were 32. She had her first lung transplant at 14 and second in our mid 20's.

The list is funny and people get moved around depending on how their condition is evaluated.

I'm not certain why the rule is set at 10, but I would guess it has to do with development and chance of rejection of the organ. It is certainly sad and I would be doing the same as her mom and fighting for anything to save her litle girl.

According to the article I posted it doesn't have to do with development but that on the adult list they normally start for age 12 and because she's under that she is lower on the list. However, she is one of the highest on the children's list.

Spacers's picture
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The more I read about this, the more I don't like it. It seems that the *only* reason given, in any article I've looked at, for why the age of 12 was chosen as the cut-off for the adult list, is that there haven't been enough pediatric lung transplants to develop protocols for triage, survival rate statistics, etc. And the reason for that is that there are very few donor lungs available for smaller children. So they are essentially penalizing sick children for the fact that not enough children have died to get lungs from.

But on the other hand, since most of the articles talk about the lack of pediatric lungs for donation, I have to wonder why are there so few pediatric lungs available for transplant? There doesn't seem to be as much of a shortage of pediatric hearts or livers for transplants, so why aren't there also lungs from those donors? I mean, if my kid died a tragic death that would make heart or liver donation a possibility, I'd want the doctors to take as many organs as possible to help other kids live, kwim? Why not the lungs? Is there something in the trying-to-prevent-death procedures that is making the lungs no good for transplant?

elleon17's picture
Joined: 01/26/09
Posts: 1981

Was reading a few things and it sounds like lungs are more likely to be turned away for a transplant.

More than any other vital organ offered for transplant, the lung is susceptible to injury that is difficult to prevent, detect, and predict.

To err on the side of caution, 80 percent of organ donors' lungs are rejected as unsuitable, a waste lamented by doctors and patients alike.

elleon17's picture
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"AlyssaEimers" wrote:

OT - :wavehello:

Smile

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GloriaInTX's picture
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Posts: 4116

Sebelius is worthless she could have done it if she had wanted to.

mom3girls's picture
Joined: 01/09/07
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my understanding, from having a friends whose DD is medically fragile, is that until the age of 12 the chest cavity is not the right size to facilitate a lung transplant. This could be different, they were told this almost 10 years ago. But back then they were told that even with a childrens lungs the transplant would likely fail.

Spacers's picture
Joined: 12/29/03
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No, she couldn't. She has no authority whatsoever to overrule the Organ Procurement and Transplantation Network. Congress set it up as a private, non-profit organization. You might as well ask her to order the Boy Scouts to accept gay leaders. She made the right call on this one; a political appointee should not be making this decision, the doctors should, or the courts should.

Don't politicize organ donation

GloriaInTX's picture
Joined: 07/29/08
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Yes she could have. She could have made an exception. That IS what the doctors had decided, that an adult organ would work. All the Judge did was force her to do what she could have done anyway.

On Tuesday, Health and Human Services Secretary Kathleen Sebelius told a congressional panel she would not interfere in the lung-transplant decision of a 10-year-old girl dying of cystic fibrosis. Wednesday, a federal judge ordered her to do just that.

The order provides an exception to what is known as the "under-12 rule" of the Organ Procurement and Transplantation Network, which says that children under 12 should be deferred on waiting lists for adult organs. But here's the thing: As rare as intact adult organs are to come by for transplantation, the chances of finding a child-sized body part are even slimmer. Sarah Murnaghan, the girl at the center of this legal battle, has been on the waiting list for a child's lungs since 2011.

"I'm begging you.… She has three to five weeks to live. Please suspend the rules," Rep. Lou Barletta, R-Pa., urged Sebelius at the ruling. While the secretary has said she wants the policy to be reviewed, in this case, she deferred the transplant decisions to the medical community. "The worst of all worlds, in my mind, is to pick and choose who lives and who dies," she said.

So the parents sued early Wednesday morning, and the judge issued the order before the close of business the same day. Here's an excerpt, with none-too-kind words for the secretary:

The Plaintiffs contend … the Secretary's refusal to set aside the Under 12 Rule to protect the very few children nationally who are subject to it, despite evidence showing that the Rule discriminates against children and serves no purpose, is arbitrary, capricious, and an abuse of discretion.

Sarah Murnaghan still may not get a lung, but now she will be considered the same as an adult waiting for one. The order lasts for 10 days; a hearing for a continued injunction will be held June 14.

That Was Quick: Judge Orders Sebelius to Suspend Organ-Transplant Rules for a Dying Child

Read the entire court order here.
http://images.politico.com/global/2013/06/05/https___ecfpaeduscourtsgov_cgi-bin_show_temppl_filefile0879472214301256.html

Spacers's picture
Joined: 12/29/03
Posts: 4103

Please show me where, besides in some Republican minds, the director of the HHS is shown to have any authority to overrule policy at any independent organization. That notion completely violates the spirit of having the organ donor organization be independent from party politics in the first place. And the judge didn't force Ms. Sebelius to do anything; he made a court order for the independent organ donor organization to make an exception to it's stated policy in this one case. The judge has authority to do that. Ms. Sebelius does not.

GloriaInTX's picture
Joined: 07/29/08
Posts: 4116

"Spacers" wrote:

Please show me where, besides in some Republican minds, the director of the HHS is shown to have any authority to overrule policy at any independent organization. That notion completely violates the spirit of having the organ donor organization be independent from party politics in the first place. And the judge didn't force Ms. Sebelius to do anything; he made a court order for the independent organ donor organization to make an exception to it's stated policy in this one case. The judge has authority to do that. Ms. Sebelius does not.

Did you read the ruling? The judge ordered Sebelius to tell the OPTN to drop the age rule. The court order didn't tell OPTN to do it directly. How could he order her to do that if she did not have the authority in the first place? Even the court order is a ruling against her in her official capacity not the organ donor organization.

The Plaintiffs contend, inter alia, that the Under 12 Rule violates the command of the National Organ Transplant Act of 1984, 42 U.S.C. ? 274(b)(2) that the system for allocating donated organs be “equitable” and address “the unique health care
Case 2:13-cv-03083-MMB Document 5 Filed 06/05/13 Page 1 of 2
needs of children” as well as the Secretary’s own regulation, 42 C.F.R. ? 121.8(b), which requires OPTN’s policies to give greatest consideration to allocating organs based on medical urgency, and that the Secretary’s refusal to set aside the Under 12 Rule to protect the very few children nationally who are subject to it, despite evidence showing that the Rule discriminates against children and serves no purpose, is arbitrary, capricious, and an abuse of discretion. AND NOW, having considered the matter, including the Declarations of Sharon Ruddock and Arthur Baines, it is hereby ordered that the motion for a TRO is granted and that the Secretary shall direct the OPTN to immediately cease application of the Under 12 Rule as to Sarah Murnaghan so that she can be considered for receipt of donated lungs from adults based on the medical severity of her condition as compared to the medical severity of persons over 12 in the OPTN system.

JANET AND FRANCIS MURNAGHAN :
1024 Arbor Way :
Newtown Square, Pa 19073 : Civil Action
: No. 13-3083
Plaintiff, :
v. :
:
UNITED STATES DEPARTMENT OF HEALTH :
& HUMAN SERVICES; KATHLEEN SEBELIUS, :
in her official capacity as Secretary of the U.S. :
Department of Health & Human Services;
:
200 Independence Ave., S.W., Room 120F :
Washington, D.C. 20201

Spacers's picture
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Posts: 4103

Sarah is getting a new set of lungs this morning from an adult donor. There's no information yet on whether they came through the OPTN or as a "designated donation." Wishing her the best!
Pa. girl who took on donor rules gets adult lungs - SFGate

GloriaInTX's picture
Joined: 07/29/08
Posts: 4116

I am so glad she is getting a chance. The judge ruled that another 11 year old boy also had to be added to the adult transplant list on the same day he made the ruling for Sarah so I hope he gets a transplant too.

GloriaInTX's picture
Joined: 07/29/08
Posts: 4116

As I said Kathleen Sebelius is worthless. I can't believe she actually said this. I guess I should have just not sent my kids to school at all since they didn't go to preschool.

Children who don’t get a pre-kindergarten education, ideally from birth to age 5, might fall behind and “may as well drop out” by third grade, Secretary of Health and Human Services Kathleen Sebelius said on Wednesday at an event to garner support for President Barack Obama's $75-billion proposal to increase pre-school enrollment across the country.

Sebelius said investing in pre-school education would bring "prosperity to all our people."

“If we want to be a competitive country, if we want to make sure that we can achieve prosperity for all of our people, we have to figure out a way to have productive citizens throughout our population,” Sebelius said at the event, marking the one-year anniversary of an Educare school in the District of Columbia that serves children 6 weeks old to 5 years.

“We’ve got to make sure that kids by the time they hit kindergarten aren’t so far behind that they don’t ever catch up, and by the third grade they may as well drop out because they’re never going to catch up,” Sebelius said. "That's the snapshot that we have today."

Sebelius: Kids 'So Far Behind' by 3rd Grade 'May As Well Drop Out' | CNS News

Spacers's picture
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What does that have to do with the organ donor law?

GloriaInTX's picture
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"Spacers" wrote:

What does that have to do with the organ donor law?

Just the fact that our HHS director that is overseeing these regulations is incompetent. And she will be overseeing Obamacare? Scary.